November 2016

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Leave no one behind: Patient Solidarity Day 2016
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"United we stand in our call for patient-centred universal health coverage for all by 2030. Leave no-one behind," that's the motto for Patient Solidarity Day on Saturday, 3 December 2016. The day is an opportunity for patients around the world to come together and unite in a call for patient-centred universal health coverage. It is a reminder of the global voice that we, as patients, have and we must use it to hold stakeholders to account.

Go to and get behind the campaign. The site provides big and small ideas for activities and events, plenty of background information and a range of resources and marketing materials you can adapt. You could use social media to engage with your community, print flyers, run a cultural event or hold free health screenings.
Personal and consumer stories
Hospitals and dementia

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Imelda Gilmore is one of our individual members. Her husband, Graham, died last month and Imelda has written a blog about his time in hospital.

"I took the opportunity to ask the doctor what would have happened if Graham had had a cardiac arrest – they would have resuscitated him. This would contravene his advance care plan,..."

Talking about endometriosis and chronic pain

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Sylvia and her mum Lesley front the not for profit health promotion charity Endo Active, one of our organisational members. She was diagnosed with endometriosis at 21 but has been feeling the symptoms, like chronic pain, from age 11. Listen to her talk about it on community radio station, 2SER-FM.

My seven responses to unsolicited medical advice 

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Many people who live with a chronic condition have received advice from well-meaning friends and even strangers about their health. Laura Seil Ruszcyk blogs about the often absurd advice, containing no valid information based on scientific facts despite the person offering it believing every word they speak.
News and current affairs

World AIDS Day is held on 1 December each year. It raises awareness across the world and in the community about HIV and AIDS. It is a day for the community to show their support for people living with HIV and to commemorate people who have died of AIDS related conditions or other conditions associated with HIV. It is also a good reminder to get checked if you need to. Go to for more information.

Did you know in NSW?
  • There are about 10,000 people living with HIV.
  • At least 10% of people living with HIV don’t know they have the virus and could unknowingly pass it on.
  • One in six people diagnosed with HIV are heterosexual.
  • Early treatment means you can live a long and healthy life.
  • Testing is free, easy, fast and confidential.
photo credit: minjungkim

Tax on sugary drinks the way to curb obesity?

A tax on sugary drinks is an idea whose time has come, the Consumers Health Forum says.

“The latest analysis from the Grattan Institute makes a strong case for a tax on sugar-sweetened beverages. It adds to the growing calls from health leaders for Australia to take this vital step to reduce obesity,” the CEO of the Consumers Health Forum, Leanne Wells, said.

“There are now 15  countries which have implemented a tax on sugary drinks or plan to do so, along with four cities and districts in the United States.

“Australia’s adult obesity rate is among the highest in the world and demands more concerted counter-measures.  While a sugar tax is but one important action we can take to encourage healthier lifestyles in Australia, it would send a tangible message to consumers alerting them to the unhealthy level of sugar in their soft drink."

However, this Sydney Morning Herald article says it won't solve the obesity problem and this opinion piece on health blog croakey argues against a sugar tax.

What are your thoughts on a sugary drinks tax? Let us know on facebook.

photo credit: Marino González

Should family members of those with mental illness have access to their health information?

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In the Australian e-newspaper The Conversation, Rachel Yates asks whether the law should allow better communication between health professionals, families and carers of those with mental illness even if this impacts on patients’ confidentiality.

The tragic death of former Adelaide Crows’ coach Phil Walsh, killed by his son Cy suffering from a mental illness, has highlighted the difficulties faced by families of those with mental health issues.

Phil Walsh’s wife Meredith emphasised her family’s struggle under current laws in accessing information to support their son. She called for the law to be changed to allow families better access to treatment information.

What are your thoughts on this? Let us know on facebook!

photo credit: Ron Dollete

‘Healthy’ fast food chains not living up to their claims

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Each month, 11.5 million Australians consume fast food. Alongside traditional burger, fried chicken and pizza chains, new chains are positioning themselves as healthier alternatives to the typical, energy-, saturated fat-, sugar- and salt-laden meals on offer at traditional chains.

The Conversation now reports that more than 40 percent of menu items being marketed using such health claims may not have complied with the requirements of the Australia New Zealand Food Standards Code.

Worst offenders were those positioning themselves as “healthier” – such as a popular juice chain and a popular salad chain (the authors have chosen not to publish the names of the chains).

photo credit: Razvan Cosmin

Do women react differently than men to medications?

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QUESTION: I’m interested in knowing whether women ever respond differently than men to prescription drugs. Do they?

ANSWER: The short answer to your question is yes, in some cases. But it’s taken the medical community a long time to reach that conclusion.

Traditionally, it was believed that men and women react to medications in the same way. In recent years, however, there has been a growing awareness that women may not always respond in a similar fashion as men to certain drugs.

Minister signals changes in doctor-nurse roles, call for more consumer-centred care

The Health Minister, Sussan Ley, is forecasting many changes to the health workforce, driven by technology and growing demand for services. 

She has revealed her insights in an article for the latest edition of the Consumers Health Forum journal, Health Voices, titled Health consumers and workforce - are we engaged? focusing on the issues facing Australia’s health workforce in providing patient-centred care. 

The Minister’s article is one of 20 articles by workforce leaders and experts signalling big changes in health workforce composition and practices, including the development of more consumer-focused care systems. 

Read this issue of Health Voices here


Have your say
Young and using hospital services in Sydney? 

The Association for the Wellbeing of Children in Healthcare (AWCH) and The Sydney Children's Hospital Network (SCHN) are currently seeking young people aged 12-18 years who use their services for their Youth Advisory Council.

If you are interested please phone the Consumer Engagement Team on (02) 9845 3297 or email:

The Australian Digital Health Agency wants you

There’s nothing more important than our health and the health of those we care about. Putting data and technology safely to work for patients, consumers and the healthcare professionals who look after them can help Australians live healthier, happier and more productive lives.

The Australian Digital Health Agency wants to hear from you. Whether you’re a patient, a member of the public, a healthcare provider, scientist or researcher, entrepreneur or technology innovator. Tell us what is important to you so that what we do is shaped around what you need.

Take the survey now. It is open until 31 January 2017, and you can save your responses so that you don't have to complete the survey in one go.

Read more about the Australian Digital Health Agency. 

Join the ACI Consumer Enablement Working Group

The Agency for Clinical Innovation (ACI) is looking for health consumers to help them develop a framework that empowers and enables consumers in NSW to access appropriate services and to manage their care needs, multi-morbidities, disease signs and symptoms, and medications.

The Framework will outline the core components of consumer enablement and evidence-based interventions and monitoring mechanisms that can be used to improve health outcomes. 

Meetings will be monthly with the first one starting on Thursday, 8 December between 12:00-1:30pm.

If you are interested in helping ACI develop this framework and/or want to know more, please contact:
Joanna Goodenough
Project Officer, Primary and Chronic Care Team, Agency for Clinical Innovation
02 9464 4685

Living in South Eastern NSW? Your chance to have a say!

Express your interest in volunteering for Coordinare's (South Eastern NSW PHN) Consumer Health Panel - it's your chance to be the voice for your local community! You will be asked to provide feedback on a range of health care issues or services that impact upon you, your family or friends.

Whether its access to after hours health services, your ability to see a doctor when you need to, or the new My Health Record...

By sharing your views, you can help shape the future of our health care system! Coordinare are looking for residents from South Eastern NSW, aged 18 years or older, and a regular user of health care services.

Complete the expression of interest form to apply
What do you think about The Wrap?

We want to know what you think about this very e-newsletter The Wrap and our website. Please tell us what you like, don't like and what you think we could to better. All feedback helps us to communicate better with you, help you in your important advocacy work and ultimately make sure health consumers have a voice in NSW.

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Resources and events

Breathless in Macquarie – Getting great care for asthma and other conditions

This inaugural Macquarie Minds Showcase will be an interactive workshop delivered by the Australian Institute of Health Innovation (AIHI).

One of AIHI's researchers will lead a discussion about the path of evidence translation into practice, showcasing asthma as a case study. He will show how a new approach is helping patients to breathe easier by benefiting from new discoveries sooner.

When: 14 December, 11.00-12.30pm
Where: Macquarie University, North Ryde Campus

Here are some of the reasons why this is a workshop not to be missed:

  • interactive – real-time big screen Q&A for the audience, so if you have a smartphone or tablet, please bring it along. Don’t panic if you do not have a device;  alternative options available
  • participate in a real-world research study through this workshop to help inform our research into improving healthcare for patients
  • learn about how to better interact with the health system to receive the best possible care.

the event will be followed by lunch.

Register at, then, click 'Breathless in Macquarie - Getting great care for asthma and other conditions' and add to agenda. (NB: There are other workshops happening between the 13 to 14 December, attendees are welcome to attend to any of those)

What to Expect: Radiation Therapy 101

This informative, short video provides a really good explanation about how radiation therapy works. If you or somebody you know needs radiation, or you are trying to explain to your patients how it works, this video will help.
99 seconds that encapsulates the power of HealtheNet & My Health Record for patients

This 99-second video is voiced from the perspective of a patient with motion graphics including icons, kinetic typography and animated characters, clearly explaining the benefits of HealtheNet and the My Health Record.
14th National Rural Health Conference in April 2017

The 14th National Rural Health Conference is shaping up to be another unique and inspiring event with more than 500 people submitting an abstract for a potential spot on the program.

When: 26 - 29 April 2017
Where: Cairns

The abstracts received create quite a profile of contemporary issues influencing health in rural and remote areas, and they reveal a continued strong commitment to improving the health and wellbeing of people in rural and remote Australia.  Abstracts are currently being reviewed, ranked and configured into a thought-provoking and diverse conference program.

Register now for early bird rate                     Click for exhibition and sponsorship opportunities
I want paper

Would you prefer to receive The Wrap as a printed hard-copy via post? Or do you know someone who would like to read it but doesn't have email?

If so, please write to us - or HCNSW, Suite 3 / Level 8, 280 Pitt Street, Sydney NSW 2000 - and we will send you a printed version of The Wrap going forward. 

Did you know you can book us for customised training?

Health Consumers NSW runs individualised training courses for health services interested in supporting their consumer representatives to be the best they can be. The training is also useful for staff to understand how to engage the community and consumer representatives and fulfill Standard 2 obligations. 

There are two-day comprehensive programs or one-day short courses available, both of which can be tailored for your organisation depending on your needs. 

Contact us on 02 9986 1082 or to make a booking or enquiry.
Research and academics
Study to develop a new health care service delivery model

The University of South Australia, in partnership with Flinders University and Endeavour College, are conducting an exciting new study that will examine the views and needs of Australian health consumers and health care providers in relation to integrative health care. You can take part by completing one or both of the below surveys.

Data from this multi-stage, mixed-method study will be used to develop a new health care service delivery model for primary care.

Understanding Consumer Expectations and Experiences of the Health Care System

Conversations Project: 20-minute online survey exploring the health care needs of health consumers. Go to the project website for more information or to ask questions. Alternatively go here to take the survey. 
Seeking the views of Australian health consumers and health care providers on integrative health care

TIME Project: 15-20 minute online survey exploring health consumer's views on integrative health care. Go to the project website for further information or to ask a question. Or go here to take the survey.
A snaphot from our twittersphere...

You Retweeted
Julie McCrossin ‏@JulieMcCrossin  22h22 hours agoSydney, New South Wales

Consumer Advisory Panel Call for EOI | GI Cancer Institute @TargetingCancer @CHFofAustralia @HCNSW @CancerVoicesNSW …

You Retweeted
Julie McCrossin ‏@JulieMcCrossin  Nov 29

Social media connects patients to mutual benefit @CHFofAustralia @HCNSW @TargetingCancer @CancerVoicesAu @swallowsgroup @HeadNeckNZ

"Social media can help patients to connect in unlimited ways" > @SuissePatiente  #breastcancer

You Retweeted
Julie McCrossin ‏@JulieMcCrossin  Nov 28

Australian resources for Head and Neck Cancer patients @CancerVoicesAu @CHFofAustralia @HCNSW @HeadNeckNZ @TargetingCancer @RACGP

Beyond Five @beyondfiveorg
Would you like some simple, effective tools to direct your patients to Beyond Five’s online resources? Email us at
Become a HCNSW member - it's free to join!
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