The newsletter of the Health Care Consumers’ Association Inc.
Volume 21 / Issue 21 / 6 November 2025

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HCCA is delighted to support the nominations of two of our members for Australian of the Year awards.  Longtime member Adele Stevens has been nominated for Senior Australian of the Year. Adele has been a member of HCCA since 2003, in an impressive lineup of roles including as HCCA President from 2008-2012. She is an active advocate with HCCA and elsewhere, and our organisation continues to benefit from the experience, support and mentoring that she provides to our members and staff. You can read more about Adele here. Sarah McGoram has been nominated for Australian of the Year. Sarah has supported and campaigned on behalf of cancer patients, including for Rare Cancers Australia (RCA), highlighting systemic inequities in access to treatment, support, and information. You can read more about Sarah here.

Voluntary assisted dying (VAD) is now a legal option in the ACT for eligible people who are facing a serious, life-limiting medical condition.

Voluntary assisted dying is using medical help to end your life at a time you choose. It is for people who have a medical condition that is terminal and causing suffering.

It is in addition to other end-of-life care — it is not instead of palliative care.

To access voluntary assisted dying you must:

• meet all the requirements
• follow all the steps of the process.

Who can apply?

You must:

• Be aged 18 or older.
• Have lived in the ACT for the past 12 months (or apply for an exemption if you have a strong connection to the ACT).
• Have an advanced, progressive condition that will cause death and is causing suffering you find intolerable.
• Be able to understand, make and communicate your decisions throughout the process.

What is the process?

The law sets a series of steps that must be followed. These include requesting help, assessments by authorised practitioners, making a final request, choosing how the dying will be assisted, and then the administration of the substance.

You can stop the process at any time.

More information is available in the voluntary assisted dying general information brochure.

There is information available on the ACT Government website.

Next week is the HCCA Annual General Meeting. We have filled all our inperson spots! If you want to join the meeting, you can join online. Contact the office if you need more information or support to do this. I’m looking forward to seeing many of you next week.

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

Canberra Health Services (CHS) is developing a procedure to guide supporting patients to more to alternative, more appropriate, care when they are finished their hospital treatment but their next steps are uncertain.

The procedure outlines how CHS support patients with complex or unclear plans after treatment. It explains the options available, how decisions are made, and how they work to balance everyone’s needs fairly and transparently. The goal is the keep patients safe in an environment that best meets their current care needs and ensure hospital beds are available for others who need timely care.

If you would like to review the draft procedure, please contact Jessica Lamb via email ([email protected]) or by phoning the HCCA office on 6230 7800.

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

Health Literacy Update

This fortnight, the team presented:

• Staying Safe in Hospital online for the public
• Researchers and Consumer Engagement at the University of Canberra
• Staying Safe in Hospital for Winnunga Nimmityjah

We have also updated the Staying Safe in Hospital booklets on our website. You can use these to help you or someone you care for prepare for a hospital stay, stay safe in hospital and plan for a safe transition home.

Ivapene joined some of the community leaders at the Australian Multicultural Action Network’s (AMAN) event on Gambling Harm Awareness.

Caption L to R: Chin, Ivapene, Ravi at AMAN Launch Gambling Harm Awareness

— the Health Literacy team
(C and Ivapene)

Thunderstorm asthma is when a storm stirs up grass pollen in the air which triggers an asthma flare-up or attack. This can happen even if you haven't been told you have asthma. Canberra is at risk at the moment because of sudden storms and high pollen counts.

Things you can do to be prepared:

• See your doctor for up-to-date scripts for asthma and hay fever medicines
• Use your preventer inhaler
• Control hay fever with medicines
• Check pollen levels and stay inside on bad days - download the AirRater app or check Canberra Pollen

Get more information on the Asthma Australia website or call their free info line on 1800 ASTHMA (1800 278 462).

Chronic Conditions Network Update

Janine and Michelle went along to the Parkinson’s ACT Conference last week and it was great to see a sold-out event with 300 ticket holders! The program was an excellent mix of health presenters in neurology and physiotherapy and fun inter-activities like a movement class with the ZEST dancers. Thank you to our CCN partners Jess, Kathryn and the team at Parkinson’s ACT (The Hospital Research Group) for putting together such a great event and inviting us along.

Caption L to R: Michelle Cullen, Jessica Vandine and Kathryn Skillman

— 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! 

The Human Research Ethics Committee is responsible for carefully reviewing research that involves people to make sure it meets ethical standards. The committee is seeking a consumer representative member with an interest in and a basic understanding of research and ethics when it comes to human participation.

For full information, please visit the Consumer Opportunities page on our website.

 New! 

Expressions of interest are due by 11.30pm (AEST) on 15 December 2025.

The Australian Government Department of Health, Disability and Ageing is seeking Expression of Interest for the below Health Technology Assessment advisory committees.

• Medical Services Advisory Committee (MSAC)
  • MSAC PICO Advisory Sub-Committee (PASC)
  • MSAC Evaluation Sub-Committee (ESC)
• Pharmaceutical Benefits Advisory Committee (PBAC)
  • PBAC Drug Utilisation Sub-Committee (DUSC)
  • PBAC Economics Sub-Committee (ESC)
  • PBAC Nutritional Products Working Party (NPWP)
• Medical Devices and Human Tissue Advisory Committee (MDHTAC)
  • MDHTAC Expert Clinical Advisory Groups (ECAGs); and
• Consumer and industry member vacancies.

Applications are welcome from individuals with a broad range of medical, health economic, consumer and clinical expertise. For more information on selection criteria, remuneration, time commitment, see the applicant pack on the department’s job vacancies page.

 New! 

The Australian Centre for Health Services Innovation (AusHSI) at Queensland University of Technology (QUT), in collaboration with Queensland Health, South Australia Health, and Flinders University, is undertaking a study to find out what healthcare consumers' preferences are regarding designated registered nurse medicine prescribing.

To understand consumers' preferences, they would like to conduct interviews with consumers who:

• have a lived experience of being prescribed medication
• are at least 18 years of age

For full information, please visit the Consumer Opportunities page on our website.

 New! 

Researchers from Macquarie University and Sydney University are inviting people aged 60+ with chronic illness to take part in a study exploring the links between chronic illness, social isolation and loneliness.

To be eligible to participate you must:  

• Be 60 years and over;  
• Be diagnosed with at least one of the nine common physical chronic diseases (i.e. arthritis, asthma, diabetes, back pain, cancer, chronic kidney disease, chronic obstructive pulmonary disease, osteoporosis, cardiovascular disease);  

You do not have to be experiencing loneliness or social isolation to participate.  

You can read more about the study and what is involved on the Participant Information and Consent Form.

You can learn more about the project on the project website. Alternatively, if you are interested in learning more about this study, completing this study by post, or signing up, you can contact the research team at [email protected]

 New! 

Do you live in the ACT? Do you want to help make sure everyone in our community is safe when a disaster happens? The ACT Government is making an Accessible Disaster Communications Toolkit to help people know what to do before, during, and after an emergency. This toolkit is for all Canberrans, and specifically aims to overcome barriers, such as communication, comprehension, language, and mobility, that many in our community experience every day. We are looking for people with knowledge of these barriers to get involved in this work.

Join the codesign workshop group

Work with others to create ideas and designs for the toolkit. We will need you to attend all three workshops, so the group works together creating the toolkit.

Workshop 1 – Codesign session: Thursday, 20 November 2025, 9:30 am to 1:30 pm.

Workshop 2 – Codesign session: Thursday, 4 December 2025, 9:30 am to 1:30 pm.

Workshop 3 – Design day with the experts:  Tuesday, 24 February 2026, 9:30 am to 1:30 pm.

If you can’t make it to the codesign workshops, you could talk with us one-on-one in a private chat to hear your ideas, either in person or online.

If you want to help, please tell us you're interested by filling out this Expression of Interest: https://www.surveymonkey.com/r/9ZHSVXF

Your help will make a big difference to keep everyone in the ACT safe!

Items of Interest

Dr Ranjana Srivastava reflects on guiding her elderly mother through hospital care, revealing how “patient-centred care” often stops at paperwork. Despite thorough checklists, genuine care requires listening, cultural understanding, and human connection beyond the forms.

To read more, please find the full article here; As a doctor, guiding my mum through hospital showed me true patient-centered care takes more than paperwork.

A national survey by the Consumers Health Forum reveals growing concern about healthcare affordability in Australia. One in ten people said they couldn’t afford needed medical care in the past year, and nearly half skipped care altogether. Australians want major changes—calling for more health workers, lower costs, and better access to services—as confidence in being able to afford care if seriously ill remains low.

To read more, click here.

Radio 1RPH and Advocacy for Inclusion have launched a new podcast, The Independent Assessment, hosted by Craig Wallace and C Moore. In their first episode, they speak to Sarah Langston and Dwayne Cranfield about activism and advocacy in all its forms.

Listen now.

Earlier this year we were fortunate to have local consumer advocate Jen Mackay join HCCA’s consumer representative training. She is featured towards the end of this article, which highlights the financial issues facing people who need dental reconstruction work after having treatment for oral cancers.

To read more, please find the full article here;

Australians with oral cancer forced to drain super or remortgage homes to pay for dental prosthetics because of funding gap - ABC News

Conversation at the Crossroads will be hosting its third Annual Oration, to be delivered by Antoinette Lattouf, a multi-award-winning journalist, broadcaster, author and mental health advocate who brings clarity, courage and wit to the hardest conversations.

Lattouf will be joined by Gabriel Shipton, award-winning film maker and human rights advocate. This is event has an online option for those outside Melbourne.

Date: Friday 14 November 2025

Time: 5:30 pm  9:00 pm

You can find out more and book tickets at the Conversation at the Crossroads website.

**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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