The newsletter of the Health Care Consumers’ Association Inc.
Volume 11 / Issue 18 / 22 May 2025

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There have been a few staff changes at HCCA to let you know about.

• Loan Dao has resigned from HCCA and taken a role at a national not for profit. We thank Loan for her work and wish her well in her new position. 
• Nadia Owour has moved from the Consumer Participation Team to work with Kathryn Briant on the Quality Use of Medicines project. This makes great use of Nadia's public policy background, as well as her work with HCCA on research projects, consumer participation and the Quality and Safety Consumer Reference Group. 
• Darcy Whitmore has moved from the infrastructure role to take on the Consumer Representatives Coordination role. Many of the reps will know Darcy and we are pleased that Darcy has taken this role on. Darcy will continue to work closely with Kate Gorman. From now on when we have any issues or need support with consumer rep roles it will be Darcy who responds.

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. 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 are seeking 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 (ACT Labor), Leanne Castley MLA (Canberra Liberals) and Emma Davidson MLA (ACT Greens).

Blog posts for the online sessions with ACT Labour's Rachel Stephen-Smith MLA, Canberra Liberal's Leanne Castley MLA and ACT Green's Emma Davidson MLA are now on our website. 

Every day, Canberrans rely on community services – often without even realising it. But here's the reality: ACT community services are significantly underfunded. This funding shortfall threatens the essential programs and support that so many in our community depend on. We need your help to change this.

Your voice can make a significant impact. By joining our campaign, you can help us ensure the government understands the importance of increased funding for community services. You can help by using the tag #ACTforCommunity on social media, sharing the resources about the campaign or contacting your local candidates.

Together, we can make a real difference. By joining ACTforCommunity, you're not just advocating for funding; you're standing up for the future of our entire community.

Let’s unite to ensure everyone in our community has the support they need!

The FluTracking Australia Winter Update 2024 has been released. This comprehensive report provides valuable insights into influenza activity and trends during the winter season. Like many members of HCCA I have been contributing to this survey for a couple of years. The reports are always interesting. The survey hits your inbox early each Monday morning and takes less than a minute to complete. I can recommend contributing to this research.

Darlene Cox
Executive Director

In this Issue

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

Upcoming HCCA Events

Wednesday 30 October, 10am – 11am

Venue (Online via Zoom)

An informative online session on writing and reviewing health information to make it easy to read and understand. This session is for consumer representatives, health workers and anyone with an interest in health literate practice!

Learn more and register for Writing Health Information Everyone Can Understand on Humanitix.

Infrastructure Update

We have been receiving feedback from consumers and cares about the waiting area for the Emergency Department at North Canberra Hospital (NCH). We have collated the feedback and provided this to NCH and look forward to working with them to improve the area. We will have more to say in the next newsletter.

The new 24/7 cafe at Canberra Hospital is now open. It is on level 2 (ground level) inside the Main Reception of Building 5.

The new café is called ‘Soul’. It has a fresh and modern look and is open all day and night. It is ready to serve up food and coffee for staff, consumers and visitors to the hospital.

— Darcy
(Infrastructure Project Officer)

Policy and Research Update

The Australian Commission on Safety & Quality in Health Care is seeking input from health organisations and health professionals on the above draft Framework.

The Framework aims to optimise the use of medicines and reduce the risk of medicine related harm during transitions between health care providers and/or health care settings.

If you are a health professional, you can provide input via the survey. Completed surveys are due by Sunday 27 October.

If you have any comments, please send them to the HCCA office and we will include them in our response.

Related to this is an interesting editorial in Australian Prescriber on Achieving safe medication management during transitions of care from hospital: time for a stewardship approach - Australian Prescriber (tg.org.au)

From 1 October 2024, people 18 years and older can buy vapes with up to 20 mg/mL of nicotine from a participating pharmacy without a prescription, where state and territory laws allow.

People under 18 years still need a prescription to purchase vapes, where state and territory laws allow, to ensure they get appropriate medical advice and supervision. Patients who require vapes with a concentration of nicotine higher than 20 mg/mL will need a prescription, regardless of their age.

For more information on the changes, including factsheets for carers, and people who vape visit the Therapeutic Goods Administration website.

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

Health Literacy Update

C and Kathryn headed up to Sydney for the launch of the NSW Statewide Health Literacy Hub. It was fantastic to hear about the wide range of health literacy activities taking place across NSW and connect with other advocates for healthg literacy. Some of the highlights included:

• A panel on translating health literacy from policy to practice, including ideas for getting senior leadership invested in the idea.
• The breakout sessions for research, which had a strong equity focus, like working with people with intellectual disability to design better patient experience measures
• A masterclass on Health Literacy by Design with Kristine Sørensen of the Global Health Literacy Academy.

Kathryn and C with Terri Vaccaro and Rawa Osman

We are also thrilled to catch up with our collaborators on the Quality Use of Medicines Project, Rawa Osman and Terri Vaccaro.

C was joined by Renee Heaton to present to Canberra Health Services’ Diversity and Inclusion Day on ways to support people with disability in health services. It was great to share tips and resources with the group and also encourage health workers to share their own thoughts on how to improve inclusion.

Darcy went to Companion House last week to present ‘Navigating the Health System’. It was a great group of 15 Arabic speakers who were engaged and asked many questions about the health system. A big thank you to Lailuma Haidari of Companion House, for coordinating this session for HCCA.

At the COTA Seniors’ Expo 2024, we had a fantastic time connecting with the community! Over 100 people stopped by our stall for a chat or to collect some resources. Over 200 resources were taken by community members. Our 'Staying Safe in Hospital' booklets were crowd favourites. Other popular resources included Health Direct and 13SICK magnets. Our team also engaged with various organisations, sharing information and building connections.

Darcy, Michelle, Shivana, Nadia and Ivapene at the COTA senior's expo 2024

A reminder for those interested in health literacy and accessibility, we’d love to have you join our Disability and Health Literacy Consumer Reference Group. Check the Consumer Opportunities section below for more information!

— the Health Literacy team
(C and Ivapene)

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.

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.

Date: Wednesday, 20th November 2024

Are you interested in contributing to cancer research? The cancer research team at ANU, led by Associate Professor Marian Burr, are hosting an informal information session over morning tea for consumers who have been impacted by cancer to form a consumer representative committee to provide input into the planning and sharing of our research.

Who is eligible to attend?
This session is open to:

• People who have or have had any type of cancer.
• Carers of individuals who are currently or have been affected by cancer in the past.
• Anyone interested in cancer research who would like to share their experiences and contribute to improving cancer treatment.

During the session, you’ll have the chance to tour the lab, meet the research team, ask questions about their work, and provide valuable input into the planning and sharing of cancer research.

Download the event information document for more details and RSVP information.

A team of researchers at the Australian National University (ANU) has initiated a research project to examine best practices for consumer representation in palliative care. This study aims to develop a framework for optimal role delineation and training for consumer leadership within palliative care.

All experts currently working or who have worked in palliative care in Australia are invited to participate in this Delphi study. Targeted participants include, but are not limited to:

• Healthcare practitioners
• Patient representatives
• Carer representatives
• Researchers
• Educators
• Managers and board members of palliative care organisations.

Why are they conducting this research?

The challenges of training and role delineation have been identified as significant weaknesses in current consumer leadership. This study aims to develop a framework for consumer representative training and professional role delineation using the Delphi method. The framework will assist healthcare professionals in understanding their roles in consumer leadership and help leadership coordinators provide the necessary opportunities for consumer training.

Participant Information

Sign up to express your interest.

For more details or to participate, please contact Zijian Wang at [email protected] or at Tel: 0434029583. 

Items of Interest

Canberra Health Services works in partnership with the Aboriginal and Torres Strait Islander Consumer Reference Group (CRG) to improve health outcomes for Aboriginal and Torres Strait Islander consumers from the ACT and surrounds. For the past few years, the CRG has been instrumental in shaping our health services and providing community perspectives to CHS.

The CRG is inviting all Mob in the ACT to the first Spring Wellness Day, a mini health expo and a chance for the community to come together. They are bringing together CHS teams and ACT/NSW organisations to promote wellbeing, holistic healing, and have a yarn about how Aboriginal and Torres Strait Islander people can be advocates for their healthcare.

Spring Wellness Day: Event details

• Tuesday 15 October 2024, 11am-3pm
• North Canberra Hospital, Function Room, Lewisham Building (Building 13/14) and outdoor area
• BBQ, raffle prizes, entertainment from Wiradjuri Echoes

The Members of the CRG are excited to be sharing this with the Aboriginal and Torres Strait Islander community. They look forward to hearing from you.

The CEO of the Australian Commission on Safety and Quality in Health Care has announced that they have signed the “Working together to achieve sustainable high-quality health care in a changing climate” statement. They join the interim Australian Centre for Disease Control (Interim CDC), Council of Presidents of Medical Colleges (representing all medical colleges), and the Australian Indigenous Doctors Association.

The joint statement is a shared commitment to reduce the health sectors carbon emissions. It outlines how the health system can reduce its environmental impact. Organisations that have signed the statement have agreed to…

• Develop low emission models of care that prioritise prevention and high-value care.
• Mobilise the health workforce to lead the health systems response to climate change.

Read the Joint Statment here.

ACT Health is aware of a national shortage of tenofovir plus emtricitabine, a medication used for both HIV prevention (PrEP) and post-exposure treatment (PEP). The Therapeutic Goods Administration (TGA) has said the shortage of PrEP options covered by the Pharmaceutical Benefits Scheme (PBS) should improve in the next few months. In the meantime, the TGA has approved an alternative product, which will be available on the PBS from 1 October 2024.

ACT Health is working to make sure PrEP remains available to the community during this shortage, and they expect the supply to continue without interruption in the ACT.

Download Public Health Clinical Alert for full information

The Department of Health and Aged Care, Victorian Department of Health and Safer Care Victoria, in collaboration with all jurisdictions, are developing Australia’s first National Nursing Workforce Strategy (the strategy).

The strategy has been drafted using input from 6,000
stakeholders. The key issues, ideas and feedback provided during
this process is reflected in their draft strategy document.

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

To participate in consultation, click here.

Delivered by Ahpra’s National Director of Compliance, Helen Rays, this webinar is for health consumer advocates and community organisations who work with individuals accessing the services of registered health practitioners.

It will cover:

• The difference between registered and unregistered health professions
• The registered professions public register and how to use it
• What restrictions on a health practitioner’s registration are and how they work
• How practitioners with restrictions are monitored.

Register here to attend a national webinar on Friday 1 November 2:30 – 3:30pm (AEDT).

RSVP: by 5pm on Friday 25 October 2024

Questions about these webinars can be directed to [email protected].

**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

Our phone number is:
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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