The newsletter of the Health Care Consumers’ Association Inc.
Volume 12 / Issue 09 / 22 May 2025

Email not displaying correctly? View it in your browser

The ACT Minister for Health recently tabled a report in the Legislative Assembly addressing a key community concern around the ACT’s Voluntary Assisted Dying (VAD) legislation—what happens if a person loses decision-making capacity after being approved for VAD but before receiving the medication?

You can read the report here.

The report was prepared in response to Marisa Paterson MLA’s proposed amendment to the ACT’s VAD legislation, which aimed to enable access to VAD even if decision making capacity has been lost as long as all approvals have been granted. The report, which draws on targeted consultation with a range of stakeholders and experts, highlights that while only a small number of people are likely to be affected, the possibility of losing capacity near the end of life can cause considerable distress. Some individuals may choose to access VAD earlier than they wish, or avoid pain relief, to ensure they remain eligible.

How can we safely and compassionately provide access for those who have already been approved for VAD but lose capacity before it can be administered? 

In her speech to the Legislative Assembly, the Health Minister committed to an in-depth community consultation on the issue after VAD has been in place in the ACT for 12 months. This will allow for assessment of the real-world impacts of the current model and exploration of options for potential legislative change. Any changes would be developed through a co-design process. The minister reflected that it is important that any future decisions address the specific needs and values of the ACT community.

You may be interested to watch the Minister’s Speech, which is available on the Legislative Assembly website.

HCCA is pleased to welcome Av De Vries (he/him) to the staff team. Av is our new Consumer Participation Coordinator. He has recently moved to Canberra from Newcastle NSW and has worked with many NSW local health districts as a consumer advocate. He has just finished a project with a hospital designing and implementing targeted inclusion training for patient-facing healthcare staff. He is always up for a coffee and a chat and is looking forward to meeting and working with all the members and consumers reps at HCCA. Members can join us at HCCA’s next Members Forum on Wednesday June 4, and say hello to Av and the rest of the team. If you’re a member, keep an eye on your inbox for a forum invitation.

HCCA's newest Staff Member, Av De Vries

Darlene Cox
Executive Director

In this Issue

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

Upcoming HCCA Events

Infrastructure Update

The team has recently been out and about visiting healthcare facilities to look at infrastructure and better understand what’s working and where improvements are needed.

We recently caught up with Megan Curran, Executive Director of Critical Care, at North Canberra Hospital to take a closer look at the challenges consumers and staff are currently facing with the older buildings at that site. While plans for the new Northside Hospital are moving ahead, NCH will continue operating until the new hospital is ready to operate. It’s important we focus on making simple changes that can improve day-to-day experiences and the functionality of the building for those using the hospital now, as well as planning for the future.

Left to Right: Yelena (HCCA), Kate (HCCA), C (HCCA), Av (HCCA), Rani J (CHS), Ivapene (HCCA), Megan Curran (CHS) at North Canberra Hospital

We also had the opportunity to visit the University of Canberra Hospital. Kate, Yelena and Ivapene met with Maria Harman, Director of Nursing, to tour the hospital and look at the successful design features in the space. The facility’s design has wide, accessible entryways, natural materials, plenty of natural light and greenery, and clear, easy to read signage. These simple features create a space that feels welcoming and easy to navigate. We’re proud that many of these features reflect HCCA’s advocacy during that design process.

Left to right: Yelena (HCCA), Kate (HCCA), Maria Harman (CHS), Ivapene (HCCA) at University of Canberra Hospital

As the new Northside Hospital project progresses, we want to make sure consumer input is captured in our advice paper to help guide planning and design. If you have any ideas about what you'd like to see in the new hospital, we’d love to hear from you! Email [email protected].

— Yelena
(Infrastructure Project Officer)

Policy and Research Update

Earlier this month, Kathryn Briant and Jess Lamb attended the 2025 Value Based Health Care Congress in Melbourne, hosted by the Australian Centre for Value Based Health Care.

The keynote speaker was Associate Professor Hairil Rizal Abdullah from SingHealth. He shared how Singapore is tackling waste and improving efficiency in healthcare by focusing on value — making sure care is based on what truly benefits patients.

A key takeaway from his talk was the importance of strong relationships between clinical and administrative staff. Administrators play a leading role in driving change, but they do so by first deeply understanding clinical practice, evidence, and the challenges faced by patients and clinicians. Only then do they begin conversations about change.

Associate Professor Abdullah also discussed how AI is helping deliver consistent, accurate data quickly and supporting better clinical decisions. In Singapore, some of these AI tools are even certified as clinical devices.

You can find the slides from the keynote speech here.

The Congress also featured inspiring examples from across Australia where health services are delivering better value and outcomes for patients. Some inspiration for the ACT Health System.

It was also a great chance to connect with colleagues from health consumer organisations in Victoria, Western Australia, and Queensland.

Consumer delegates at the VBHC Congress - VBHC Conference - Alison Coghlan, Ann Marie Liddy, Clare Mullen, Susannah Morris, Jessica Lamb, Kathryn Briant.

We left the event with some big questions to consider:

• How can we turn successful pilot programs into systemic change?
• Are we solving the right problems — the ones that matter most to the community?
• Can patients, clinicians, and funders come together around a shared vision?
• How do we improve value in care while recognising and responding to the human costs of our decisions?
• What role can the social ecosystem play?

Value Based Health Care isn’t just about saving money — it’s about delivering better care that truly benefits patients. Cutting costs can be a part of that, especially by stepping away from treatments or services that don’t add value. But making these changes isn’t easy. Both consumers and clinicians can be hesitant, and we need the right motivations and support in place.

There’s a real, system-wide appetite for change right now. The key is bringing people together to co-design changes that last — and that work for everyone.

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

The Australian Commission on Safety and Quality in Health Care is seeking feedback on the Australian Safety and Quality Medical Imaging Accreditation (ASQMIA) Scheme.

Accreditation is the process of making sure a service meets a set of standards. 

A robust assessment that leads to accreditation provides confidence for the community that an accredited service supports safe and good-quality care, and risks of harm are identified and managed. Imaging practices that provide safe, high-quality services are more effective, resulting in better patient outcomes, fewer complaints and higher staff retention.

The Commission wants to ensure the proposed Australian Safety and Quality Medical Imaging Accreditation Scheme meets the sectors' and consumers' expectations regarding safety and quality in medical imaging.

You are invited to share your experiences, review the proposed accreditation scheme, and offer your insights on safety and quality in medical imaging.

Visit the Commission's website by Friday, 18 July safetyandquality.gov.au/ASQMIA.

Get ready for CHARM 2025 — your chance to connect, collaborate, and celebrate health research excellence in the ACT!

CHARM is hosted by ACT Health Directorate’s Centre for Health and Medical Research, in collaboration with Canberra Health Services, John Curtin School of Medical Research, Australian National University, University of Canberra, Australian Catholic University, UNSW Sydney and Health Care Consumers Association.

CHARM 2025 will be held in person across a variety of locations.

You can see the full program and register to attend on the CHARM website.

Health Literacy Update

This fortnight, the team was pleased to support 2 University of Canberra Nutrition students on their placement with the CHS Community Care Program. The team supported them with:

• Understanding health literacy by helping them to communicate health messages clearly and accessible for everyone.
• Guiding the development of their Healthy Eating and Type 2 Diabetes presentation. Making sure the content was engaging and easy to understand.
• Connecting them with relevant community groups who were keen to hear about healthy eating and managing diabetes.
• Supported them as they delivered their presentation.

— the Health Literacy team
(C and Ivapene)

Arthritis Australia uploaded another exciting new resource from the QUM project last week. This is the first animation created for the QUM project. Check out the new video ‘Gout Explained’. The video explains what causes gout (a common and painful type of arthritis) and how to keep it under control. Learn about the main symptoms, triggers, diet and risk factors. As well as tips for managing and preventing painful gout attacks. You can also find out more about gout and our other resources here

Have questions about antidepressant medicines? A new webpage Antidepressant medicines – What do you need to know? is now available. It answers frequently asked questions about antidepressant medicines, including:

• What they are and how they work
• Possible side effects
• What to consider when starting or stopping them

Visit the new Antidepressants FAQ page on the Quality Use of Medicines (QUM) website. You can also visit the Antidepressants in Older People page for more information on managing your medicines.

Chronic Conditions Network Update

We had eight great sessions linking community organisations to the CHN HealthPathways Team this fortnight. These sessions include giving feedback on different pages in HealthPathways so information is updated and available for GPs. This is our third year running this project and is a great collaboration between the Chronic Conditions Network and our PHN, the Capital Health Network.

Michelle (HCCA), Maddy and Mel (CHN) and Claire (Carers ACT) during our Direct Feedback on HealthPathways chat.

— Michelle
(Chronic Conditions Network Coordinator)

Consumer Involvement and Representative Opportunities

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

 New & Closing Soon!  Closing date: Wednesday 28 May 2025

oversight of and advice on HCCA policy and project development work including submissions, position statements and research design.

We are looking for people who would like to join HPRAC. To be considered for appointment to HPRAC you will need to:

• be an HCCA Member,
• work collaboratively and be accepting of different points of view,
• have broad knowledge of the health system,
• be a strategic thinker, and
• have strong written communication skills.

If this sounds like you, you can read more about the work of the committee and how to nominate here.

As part of the QUM Alliance, HCCA are working on a project to help young people who are prescribed antidepressants. We want to hear from consumers and carers. We would love to hear from you if you:

• are aged 16 to 24 and have experience with antidepressants for anxiety or depression
• are a parent or carer (over the age of 18) for someone who fits these criteria.

This experience can be current or in the past. Your insights will help us to create easy-to-understand resources that explain how to manage anxiety, depression, and the use of antidepressants safely and effectively. As a thank-you, participants will receive a gift voucher. How can you get involved?

• Take part in a 30–45 minute online interview (May – June 2025)
• Join a focus group discussion (June – August 2025)
• Help test resources and provide feedback (August – Nov 2025).

Interested or want to learn more? Please complete a short eligibility survey:

• For online consumer/parent or carer interviews: Start survey
• For focus groups or user testing: Start survey

Items of Interest

World Haemochromatosis Week will be held from 1–7 June this year, the week aims to raise awareness of Australia’s most common genetic disorder and its significant health implications. Despite being carried by 1 in 7 people and affecting 1 in 200, haemochromatosis is frequently underdiagnosed due to its non-specific symptoms such as fatigue, muscle weakness and joint pain.

Most people know anaemia causes tiredness and lethargy from too little iron in the blood. But did you know the same symptoms can occur from too much iron stored in the body?

Haemochromatosis, or iron overload, is Australia’s most common genetic disorder. It’s easy to test for, simple to treat, but tragic to ignore.

Learn more at www.ha.org.au and talk to your GP.

The Older Persons Advocacy Network (OPAN) are hosting a series of webinars called: What the new Aged Care Act means for you. This webinar will focus on the new Support at Home program that will replace the Home Care Packages (HCP) program and Short-Term Restorative Care (STRC) programme from 1 July 2025.

Date: Tuesday, 27 May 2025
Time: 1 – 2pm

To find out more and register: Support at Home costs and fees - OPAN

The ANU is hosting a series of workshops looking at Telehealth in primary care. These workshops are for 8-12 people. Each workshop will last for 90 minutes and will be conducted online. 
We invite interested people to participate in one of four workshops exploring:

• What does high quality look like for consumers for telehealth?
• What do consumers prioritise when choosing telehealth?
• What telehealth models provide the best care from a consumer perspective?

You do not need any specific experience to participate and all participants will receive a voucher for $150. The results of this study will be used to inform policy-makers of consumer preferences for different types of telehealth.
You can read more about the study here

AHPRA has released their autumn 2025 newsletter. This will include a snapshot of useful information, key pieces of work and ways you and your communities can connect with the National Registration and Accreditation Scheme for health practitioners.  Read the newsletter here

**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 Kate Gorman.

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.

Want to stop getting these emails? Unsubscribe from this list.