The newsletter of the Health Care Consumers’ Association Inc.
Volume 11 / Issue 17 / 13 May 2025

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We are now in the caretaker period in the ACT. This is the time between the pre-election period and the sitting of a new assembly. Until the election result is clear and a new government is established, the government must follow the caretaker conventions. The Guidance on caretaker conventions 2024 for the ACT Government are online and set the rules out.

The major political parties and the independents are actively campaigning. There are daily announcements. Most of these are picked up in the media. We are also hearing from parties and candidates about their plans if they are to be elected. We are keeping across these in the office so if you want to know more don't hesitate to contact us.

We are paying particular attention to the announcements that relate to the priorities that we identified. Our Statement of Priorities for the 2024 ACT Election are on the HCCA website. 

For now you can check out the following links to major parties and a range of independents we have been speaking with about what consumers need from our health system.

ACT Greens

ACT Labor

Canberra Liberals

Fiona Carrick Independent (Murrumbidgee electorate)

Independents for Canberra

Elections ACT will publish a full list of candidates after the declaration of candidate nominations on 25 September 2024.

We have hosted several forums with election candidates in lead up to the upcoming ACT election, learning about how the policies and goals of the major parties align with HCCA's priorities for health for the ACT Election. you can read our statement of priorities on our website 

HCCA members and guests were able to submit questions they have about health issues and health services in the ACT to be asked during the event. Not all of the questions put by participants were asked on the day of the forum, and HCCA will seek answers to those questions and share them with our members in future.  

One in person and three online election forums were hosted. We heard from Rachel Stephen-Smith MLA (Labour ACT Labor), Leanne Castley MLA (Canberra Liberals) and Emma Davidson MLA (ACT Greens). Blog posts will be available soon on HCCA's website here.

HCCA has a three-year membership period. The next period is for 2024-2027. Thank you to everyone who has renewed membership. There are a few people we are still following up with. Membership lapses on 30 September so there is still time to renew.

Our members are critical to our effectiveness in providing a strong consumer voice on health issues in Canberra and our region. We have valued your involvement in our work. Our collective efforts make health services work better and improves health outcomes for individual consumers and for the wider community.

If you need help with renewing your membership, please contact the office and one of the team can help you.

Darlene Cox
Executive Director

In this Issue

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

Infrastructure Update

Darcy and Kate visited the North Canberra Hospital Emergency Department where we had a tour and a chat to Megan Curran, the Executive Director of Critical Care. There are a number of design issues in the waiting and treatment spaces for both consumers and staff. We hope that some of our previous infrastructure design work can be adapted to help make these spaces more comfortable and functional in the short-medium term, until the new North Canberra Hospital is built. 

— Darcy
(Infrastructure Project Officer)

Policy and Research Update

Voluntary Assisted Dying (VAD) will become available to ACT residents from November 2025. In preparation, Canberra Health Service is preparing their VAD Model of Care. This week the Policy and Research Team ran some workshops around the draft Model of Care to hear a range of community views. We will use these discussions to inform our input on the model.

Canberrans for a Good Death are running a campaign to broaden eligibility for VAD in the ACT. This group is made up of individual members of a number of ACT community organisations including Dying with Dignity ACT. We have been talking to them about our shared interest in broadening eligibility for VAD. This is consistent with the HCCA submission to the Legislative Assembly Select Committee on VAD in 2023.

We want to see the right of access to VAD for people who experience intolerable suffering, but are not close to death, and also for people who are concerned they will become ineligible for VAD because they lose decision-making capacity before being close to death. This would include people who lose decision-making capacity, whether from accidents, advanced Dementia, and other reasons are ineligible under the current VAD Act.  

This will not change in the short term, but it is an issue of importance to many consumers and HCCA will continue to support progressive legislation that gives people choice and control.

Over the coming year, there will be lots of work happening around VAD. If this is something you are interested in, keep your eye on Consumer Bites for further opportunities for consumer input.

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

Earlier this year, HCCA provided a submission to the Senate Inquiry into Issues Related to Menopause and Perimenopause. This submission included experiences and ideas shared by our members. The final report on that inquiry was recently released. You can read the report on the Parliament of Australia website.  HCCA’s submission is number 170. There are 25 recommendations in the report. These include the development of a robust evidence base to guide policy improvement. This evidence base will guide development of other interventions that aim to improve women's experiences of menopause and perimenopause.

The Australian Commission on Safety and Quality in Health Care (ACSQHC) will soon launch their new Chronic Obstructive Pulmonary Disease Clinical Care Standard. If you are interested in attending this launch (maybe you contributed to HCCA’s input on the Standard?) you can register on the ACSQHC website. 

Canberra Health Services is seeking in put on their Falls Assessment, Management & Risk Minimisation Procedure (“the Procedure”).

The Procedure outlines the processes to be followed in assessing and managing a consumer’s risk of falls across Canberra Health Services facilities in line with available best practice. The Procedure aims to provide a clear and consistent approach to screening, assessment and management of falls prevention.

If you would like to provide input you can request a copy to be emailed to you by contacting [email protected] or phoning (02) 6230 7800. Please send in your input by Wednesday 2 October.

Canberra Health Services is developing a Providing Care After Death Procedure. This procedure includes care offered to both the deceased person and their loved ones. It covers administrative procedures as well as religious rites, such as ritual washing.

If you are interested in providing feedback on this procedure please contact Shivana Chandra ([email protected]) or call the HCCA office on 6230 7800. Feedback must be received by no later than Monday 14 October.

Health Literacy Update

The health literacy team has had a busy couple of weeks providing education sessions and training to our communities. C ran a great session on Advance Care Planning with Arthritis ACT and had chat about making the most of your health appointment over a cuppa with the ladies at Woden Community Services’ Health and Wellbeing seniors group. C and Pene ran another excellent session on health literacy with the Australian Medical Council staff before Pene headed off on a well earned break.

Earlier this month, the wonderful Jennifer Merriman joined the Health Literacy team as the project officer for the Disability and Health Literacy Project. This project will look at the health literacy needs of people with disability in the ACT and come up with recommendations for future projects in this area. Jennifer comes to us with many years of experience working to improve the lives of people with disability, including roles with TADACT and Summer Housing. Welcome Jennifer!

— the Health Literacy team
(C and Ivapene)

We would like to talk to people who are:

• Based in Australia and over 18 years of age
• An adult prescribed anticoagulants tablets for atrial fibrillation
• A carer of someone prescribed anticoagulant tablets for atrial fibrillation

To sign up for an interview, or to find out more:

• fill in your details here: register for anticoagulants consumer interviews, or
• call HCCA on (02) 6230 7800.

Learn more about HCCA’s Quality Use of Medicines work: Using Medicines for Better Health Project.

Two fact sheets on gout have been released under HCCA’s Using Medicines for Better Health Project. The fact sheets can be accessed through our Consumer Hub for Quality Use of Medicines.

• What about Gout?
• Gout and Diet

We continue to work in partnership with Arthritis Australia to develop consumer resources on gout.

Medical Republic recently published an article on Gout. The article examines some of the misunderstandings about gout and the challenges to managing gout well:

Gout – misunderstood, misjudged, mismanaged

Chronic Conditions Network Update

We recently hosted an online webinar with Feros Care, the ACT’s NDIS partner, and out Chronic Conditions Network Members. The webinar was focused on the intersection of chronic health conditions and disability, and what is eligible for NDIS funding. It was great to have some in-depth discussion on this topic because it is often ambiguous as to what health conditions can also be considered a primary disability diagnosis.

If you would like more information on this topic, there is a ‘Q&A’ document with links and answers to a number of key questions. Email [email protected] to request a copy.

— 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 date: Monday, 14 October 2024

Are you passionate about:

• Making sure health information is accessible and understandable
• Helping people with disability understand their health and have a say in their health care
• Improving how health services and workers support the health literacy of people with disabilities

Then you may want to join our Disability and Health Literacy Consumer Reference Group or become a Project Advisor for our project, Disability and Health Literacy in the ACT.

You will be helping us to:

• Develop a survey and interview guide so that we can find out about health literacy issues for people with disability in the ACT
• Understand the results of the survey and interviews
• Consider ideas that would improve health literacy for people with disability in the ACT

You might be a person with disability, a carer, a staff member of an advocacy organisation or a service provider. You do not need to have any experience as a consumer representative.

Read the draft Terms of Reference.

Register using the Expression of Interest form.

 New!  Closing date: Wednesday, 2 October 2024

The National Health and Medical Research Council (NHMRC) is looking to interview 2-4 consumers for their research project, “Improving the Health System's Response When Patients Are Harmed.” This study aims to evaluate methods used in serious incident response (when a patient is harmed) in healthcare. It aims to find out what works best in investigating these incidents and in communicating the results to patients and their families. The goal is to create guidelines that will improve how incidents are managed and how lessons are learned from them.

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

 New!  Closing date: Wednesday, 9 October 2024

Canberra Health Services is looking for a consumer to join their transport working group. The role of the working group is to overseeing and guiding CHS's transport services, including parking and sustainable transport options. The aim is to create solutions that make it safe, easy, and timely for staff, patients, families, and visitors to access health services.

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

Items of Interest

Consultation will remain open from 11 September 2024 until midnight 20 October 2024.     

Your contributions are valued and will contribute to refining the final strategy. We invite you to review the draft strategy document and provide your feedback through the survey or upload a written submission via the link. 

Arthritis Australia has launched a great campaign, 'Unboxing Accessibility', with videos talking about the accessibility of packaging for people with a range of conditions that can make opening or using products hard.

Companies that make products, including health items and medicines, need to design packaging that can be opened and used easily by everyone. Check out the videos and campaign on their website.

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

© 2024 Health Care Consumers' Association Inc, All rights reserved. Edited by Darlene Cox.

Contact us:
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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