The newsletter of the Health Care Consumers’ Association Inc.
Volume 11 / Issue 09 / 21 November 2024

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In a surprise move, Dr Marisa Paterson MLA has proposed some amendments to the Voluntary Assisted Dying Bill 2023, which would be moved in the Legislative Assembly in June. Dr Paterson is seeking feedback to decide whether or not to move these amendments. Voluntary assisted dying (VAD) is expected to be implemented in the ACT in November 2025.

Her amendments intend to address the scenario that a person with full mental capacity who has been through the application process for voluntary assisted dying, and been approved, then loses mental capacity. The amendments propose that, via a person nominated as a VAD Attorney, the person who has applied for VAD may still access it.

Key amendments are:

1. Empowering VAD Attorneys:
   • After the final assessment report, if an individual loses capacity, their VAD attorney (who holds enduring power of attorney) can authorise the individual’s access to VAD.
   • The VAD attorney's awareness and consent to their role are essential prerequisites. A confirming doctor must ascertain the individual's lack of decision-making capacity for the VAD attorney's authority to be activated.
2. ACAT Review Mechanism: 
   • An ACAT review mechanism is established to provide advice and opinion on the authority of the VAD attorney in cases where capacity is lost.
3. Consultation and Decision-Making:
   • Administrative decisions regarding VAD must be made in writing, with consultation and advice from the individual's coordinating practitioner.
   • The administering practitioner must be satisfied with the authority of the VAD attorney and the individual's lack of capacity before proceeding.
4. Flexibility and Safeguards:
   • The VAD attorney retains the discretion to decline to proceed at any point, without compulsion.
   • Administering practitioners are empowered to question the authority of the VAD attorney or refer them to another health practitioner if any concerns arise.

There is a short consultation period about these amendments which will end on Wednesday 29 May.

Dr Paterson is holding two consultation sessions about this:

• Thursday 23 May, 6:30pm at Chifley Community Room, 70 Maclaurin Cres, Chifley
• Tuesday 28 May, 1pm at Hughes Community Centre, 2 Wisdom St, Hughes

HCCA encourages anyone with an interest in voluntary assisted dying to attend a consultation session, and/or provide their feedback directly to Dr Paterson by emailing [email protected].

More information:

• You can read Dr Paterson’s media release online (PDF).
• You can also read the Consultation Draft of the proposed amendments (PDF).
• There is an Explanatory Statement on the Legislative Assembly website (PDF).

HCCA is still digesting the detail of the 2024 Federal Budget. At first glance, it includes some positive news for the health system. This includes some of HCCA’s current priority advocacy areas. Highlights include:

The health of older people: An increase of funding to ensure that older people get the medical support they need.

There is support for stronger links between aged care and health systems and support for transitions from acute care. There is funding for programs to help older patients avoid unnecessary hospital admissions as well as providing more hospital services in the community.

Improving maternity care: Support for midwifery continuity of care, access to home birth and private midwifery services.

This includes a permanent resolution to the long-standing issue of professional indemnity insurance for privately-practicing midwives attending low-risk home births.

Outpatient Services: Easier and more affordable access to Magnetic Resonance Imaging (MRI), and increased rebates for longer gynaecological consultations for complex conditions.

You can read more about what the Budget includes for Health and Aged Care on the Department of Health’s website.

Kate Gorman
Acting Executive Director

In this Issue

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

Upcoming HCCA Events

Policy and Research Update

Since September 2023, HCCA has been working with the Quality Use of Medicines (QUM) Alliance on the Using Medicines for Better Health Project. The first of four topics for this project is eczema.

We are excited to let you know that some initial consumer resources for eczema have been released:

• Eczema Care Toolkit – how to care for your or your child’s eczema
• Eczema Care Plan – work with your health professional to develop your plan for eczema management

You can find these resources on our new HCCA QUM Hub. This website provides a home for the consumer resources for all four topics in this project. These topics are eczema, gout, antidepressants in older people, and oral anticoagulants. Additional resources for eczema are coming soon. Development of consumer resources for gout is about to get underway. We will keep you posted!

Please get in touch with Kathryn Briant for more information on the Using Medicines for Better Health project: [email protected].

The Acute Medical Unit (AMU) is a 24-bed, short-stay ward and unit for adults. It is designed to deliver timely, evidenced-based, and holistic care during the admission phase of medical inpatient care.

The AMU is calling for feedback on its Models of Care & Service.

If you would like to receive a copy of these Models please email [email protected].

If you would like to provide input into HCCA’s response please email Stephen as above by Tuesday, 28 May 2024.

The National Health & Medical Research Council (NHMRC) have had a Statement on Consumer and Community Involvement in Health and Medical Research since 2006. It was last revised in 2016, and NHMRC and the Consumers Health Forum Australia are now working together to do another review.

The Statement aims to support consumer and community involvement across all types and levels of health and medical research.

You can read more online here:

• About the review
• Current NHMRC Statement (2016) on Consumer and Community Involvement in Health & Medical Research
• NHMRC Position Paper outlining rationale and scope of review
• Online survey (closes Sunday, 16 June 2024)

You can share your feedback with HCCA or fill in the online survey above. If you would like provide input to HCCA, please email [email protected]  by Monday, 3 June 2024.

AHPRA are developing a ‘Guide to embedding good practice in clinical placements, simulation-based learning and virtual care in student health practitioner education’. The Guide aims to provide evidence-based strategies for organisations involved in training and accrediting health practitioners to use. You can find the Consultation Paper on AHPRA’s website.

If you would like to provide input to HCCA’s feedback on the Guide, please email [email protected] or phone the office on 6230 7800 by Friday, 31 May 2024.

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

Health Literacy Update

This fortnight, C was thrilled to join Meridian’s Disabili-tea group to talk about rights and decision making in health care. This is a great peer support group for LGBTIQA+ folks with disability and health conditions to connect with each other and hear from speakers they choose.

Ivapene presented ‘How to make the most of your health appointment’ to seniors at Communities@Work in Ngunnawal. The session was well received with participants engaged and keen to learn about their health care rights.

Ivapene also attended activities for the Active Beginnings program. The program is now in its third week with 3 more weeks to go! All activities are free and include Core & Floor Exercise, Nia Dance, Move for Strength, Zumba, Landcare Walks, Walk & Talk with Mama Connect, Strolling for Resilience, and more.

Active Beginnings places are still available!

• Register for the program and book yourself a spot here: Program activities – Active Beginnings
• Learn more about the Active Beginnings program and activities here: Active Beginnings Program | canberra.edu.au

— the Health Literacy team
(C and Ivapene)

If you are older or have underlying health issues, you could be at higher risk of serious illness from respiratory viruses like flu, COVID, and RSV. You should talk to your health care team before you become unwell, so you can plan ahead.

Ask them:

• What kind of testing you should do if you become unwell
• If you would need a PCR pathology request form, and how you can get one
• If they recommend you take COVID or influenza antiviral treatments, and how to access them early in your illness.

Vaccination remains the best protection from severe disease and hospitalisation – talk to your doctor or pharmacist. For more information visit Be Well this Winter.

HCCA’s ‘Staying Safe in Hospital’ – now in four more languages

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.

 Closing Soon!  Closing date: Friday, 31 May 2024

The ‘Primary and Acute Care Data Linkage Project’ aims to connect information from primary care (like your GP) with information from acute care (like hospitals), to get a better idea of how patients move through the health care system.

This is a national project, with each state and territory having a consultation group of key stakeholders and experts to provide insights and advice. The ACT Health Directorate is looking for two consumers to join the ACT consultation group.

This group will start in June 2024 and hold up to ten 2-hour meetings over the following 12 months.

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

 Closing Soon!  Closing date: Wednesday, 5 June 2024

Canberra Health Services (CHS) is looking for a consumer to join the Community Care Program Clinical Governance Committee. The committee aims to lead efforts in creating a safe and high-quality culture at CHS that involves patients, carers, and consumers.

This committee meets for one hour every two months.

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

 Closing Soon!  Closing date: 11:30pm, Sunday, 26 May 2024

The Therapeutic Goods Administration (TGA) is looking for consumer representatives to fill positions on seven statutory advisory committees.

If you are selected, you will give advice and support the TGA, helping them make important decisions on a wide range of issues related to medicines, medical devices, vaccines, and other products and substances. This is to make sure they are safe and work well.

You can learn more about each committee's role on the TGA website.

If you're interested in applying, you can find more information on the Department of Health and Aged Care jobs page.

If you have any questions, you can email [email protected].

Items of Interest

There has been an increase in whooping cough cases recently. While the ACT has not seen a large rise, other regions including NSW and QLD have reported more cases in recent months.

Whooping cough is a serious bacterial infection that spreads when people cough. It can be life threatening for babies, but affects people of all ages. Symptoms start with a runny nose, sneezing, mild cough, and low fever, and then progress to severe coughing fits that can cause vomiting and breathing problems, especially in babies.

Early treatment with antibiotics is important to stop the spread and reduce symptoms. Make sure that babies, pregnant people, and people who live with or care for babies are up to date with their vaccinations.

For more information, please read the full clinical alert.

Chronic Pain Australia (CPA) is the Peak Consumer Body for the 3.6 million Australians living with pain. They provide peer-to-peer support to people living with chronic pain, and advocate for multidisciplinary care for pain management in Australia.

Each year, CPA conducts a National Pain Survey to collect data and your thoughts on important issues impacting people experiencing pain. They use the results of the survey to influence government policy, advocate for change, inform research projects and raise awareness for chronic pain.

Chronic Pain Australia would value your thoughts through the 2024 National Pain Survey online if you are an adult who:

• Lives with chronic pain, or
• Cares for/supports someone who lives with chronic pain.

The PRECISION (PhaRmacogEnomiC medIcines optimiSatIon for peOple with caNcer) project is led by Dr Marliese Alexander from the Peter MacCallum Cancer Centre in Melbourne.

They are currently running a survey about using genetic information to better prescribe medicines for people with cancer, with participants able to enter a draw for one of ten $50 gift cards.

The project would like to hear your views if:

• You are 18 or older and have had or are having treatment for cancer, or
• You have cared for an adult who has had or is having treatment for cancer.

Learn more and complete the 10-minute survey online here: Making medicines work better for you | Online survey (petermac.org.au).

**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 Kate Gorman.

Our mailing address is:
100 Maitland St, Hackett ACT 2602
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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