April 2015

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Message from the chair

Hi Everybody

Good News:
‘The consumer is the only constant throughout the patient journey. They are therefore the experts in terms of identifying their desired health outcomes and experiences of illness and care, and their expertise should be sought and respected in order to improve the quality of care. Shared decision-making, support for self-management and proactive communication are key features of person-centred health care.’ UK Health Foundation, March 2014.

This is quoted in a document just released by the NSW Agency for Clinical Innovation (ACI): ‘Patient Experience and Consumer Engagement: A Framework for Action’ Understand, Act, Empower. Dr Nigel Lyons, Chief Executive of the ACI, says in the foreword: "The establishment of the Patient, Experience and Consumer Engagement (PEACE) team demonstrates the ACI’s commitment to consumer-led redesign of healthcare. The PEACE team supports the ACI’s Networks, Institutes and Taskforces to capture consumer input and harness direct patient and staff experience to inform ACI activities. The framework provides valuable information, guidance and resources to enable this approach."
The framework and associated toolkits and resources are available on the ACI website.

I believe that this framework and the work of the ACI is very valuable in the promotion of the values and the need for consumer engagement throughout the health system. It should make a difference to the understanding of person-centred care. Well done ACI!

Betty Johnson AO  
News and updates
First partnering with consumers workshop a great success!

Our inaugural Getting to Grips with Standard 2: Partnering with Consumers workshop on 24 March was a great success.

Health professionals and consumers alike had the chance to listen and talk to Nicola Dunbar, Program Director Australian Commission for Safety & Quality in Healthcare (ACHS) and Liz Harnett, an ACHS Surveyor. Their strongest message was that they look for real partnerships with consumers.

Consumer Layla Hallam's personal story resonated strongly and Jess Crause, Sydney Local Health District's Consumer & Community Participation Manager showcased how a consumer story can be used to make a real difference. 

Professor Clifford Huges AO (left) brought home the message of the patient having to be a partner and at the centre of any services and planning.

With over 40 attendees, the workshop was fully booked. One participant said:"There was great value in having both consumers and professionals in the forum together..." and asked for more.

Due to demand, we are planning a second workshop. If you missed out this time, please contact us at and we will add you to our waiting list.

Downloads: Presentation by Dr Nicola Dunbar, Presentation by Jess Crause and Laila Hallam, Presentation by Elizabeth Harnett,Presentation by Prof Cliff Hughes

Mentoring consumer representatives    

Author: Diana Aspinell, Director Consumer Skills, Nepean Blue Mountains Medicare Local

To mentor is to guide, tutor, support and advise someone with an outcome of building a person’s confidence, knowledge and skills to carry out their consumer representative role.
A very important reason to establish a mentoring process with consumer representatives is to ensure that consumers will not be harmed by their participation in the consumer engagement program and to ensure they feel proficient in their consumer engagement role.

Read the full article by Diana Aspinell, Director Consumer Skills, Nepean Blue Mountains Medicare; photo: CC Brian Ujiie (flickr)

New primary Health Networks need to engage consumers now

Health Consumers NSW congratulates all the successful applicants for running Primary Health Networks (PHNs) in NSW.
“We acknowledge that many existing Medicare Locals have done great work involving health consumers in service planning and in the governance of their organisations.” said Dr. Anthony Brown, our Executive Director. “But work is patchy and very few Medicare Locals have integrated consumer engagement into every aspect of their work and their planning. ”
“The new PHNs provide an opportunity to strengthen consumer and community engagement in primary health care. The best way to do this is to ensure expertise on consumer and community engagement on a senior management level. Health services that are successful at consumer engagement all have consumer ‘champions’ on their Boards and we believe PHNs will benefit from doing the same,” he said.
“Each PHN is required to have a Community Advisory Committee. These bodies will be most effective when they include local health consumers and have strong structural links to the Board and senior management.”
HCNSW has developed tools and models around consumer engagement in primary health care. PHNs and other health services interested in improving their consumer engagement can contact us for more information on (02) 9986 1082 or by email

Consumer engagement event with Networking Health NSW

Health Consumers NSW in partnership with Networking Health NSW (NHNSW) announces: Working with Health Consumers in Primary Health Care Forum: Improving health care through consumer engagement and participation will be held in Sydney on Wednesday 3 June 2015.

Enhancing the roles consumers play in the health care system will significantly increase their influence on quality of the service, improve health outcomes and decreases costs. Researchers and policy makers often focus on informed choice as a primary role for consumers in improving care.

This forum is designed to assist primary health care services in partnering with existing and potential health consumers to enhance health care provision and service delivery.

It is also an opportunity for health consumers who have been involved in Medicare Local consumer or community groups or committees to contribute to the discussion about the latest thinking and practice around consumer involvement in primary health care.

The program is currently being finalised and will include the launch of a new health consumer engagement framework.

More information and registration


Full steam ahead for endometriosis awareness

Mother-and-daughter duo Lesley and Sylvia Freedman are the faces behind EndoActive Australia & NZ, a consumer organisation (and HCNSW member) dedicated to raising awareness of endometriosis, advocating for women and girls with 'endo', providing information and promoting early diagnosis.

1 in 10 women in Australia are affected by endometriosis. It is an often painful disorder in which tissue that normally lines the inside of the uterus grows outside the uterus. It most commonly involves the ovaries, bowel or the tissue lining the pelvis. Rarely, endometrial tissue spreads beyond the pelvic region. It can cause severe and chronic pain - especially during a woman's period. Fertility problems can also develop. 

After successfully petitioning a multi-national pharmaceutical company, Lesley and Sylvia now have organised the first National Endometriosis Conference in Australia - planned and organised by consumers.

"We want the conference to be a forum for doctors, clinicians and health professionals as well as patients and their families - we want both sides to share their perspectives," Sylvia said.

We quizzed the consumer activists, who work full-time on raising awareness about endo and helping women and girls understand their disease, about how they set-up a conference by themselves. Read more

Registrations to the conference are open and HCNSW is supporting this consumer-driven event by giving away four free registrations to members. Please write to by 29 April with your name and contact details and explain why you would like to attend the conference.

We also urge clinicians and health providers with an interest in endometriosis to attend the conference.

Conference website
EndoActive website
EndoActive Facebook page

Short news
Health Consumers NSW volunteer

Aaron Mostafa
has been volunteering with us since early April. He finished a Masters of Public Policy at the University of Sydney in late 2014, doing research around tobacco and obesity and resulting health policies at state and national levels.

He is working on a consumer focused literature review of health literacy and the barriers that consumers face with this issue. The research is providing some interesting information and will hopefully contribute to pathways for increasing health literacy across the state.

If you see Aaron around say hi. 
Review of Standard 2 – Partnering with Patients

The Australian Commission on Safety and Quality in Health Care (the Commission) is currently reviewing the National Safety and Quality Health Services Standards. As many of you will know, Standard 2: Partnering with Consumers has been a key motivator for many health services to improve their consumer engagement.
HCNSW was invited to a workshop in March run by the Commission to discuss the next version of Standard 2. We joined other consumer representatives as well as people from different parts of the health service to advise on the development of the next version. The Commission plans to release a draft of the new Standard for discussion in July this year. We will circulate this draft to all our members as soon it is released.

What do you think?

We are very interested to hear more about health consumers’ experience of Standard 2 and its implementation. If you have been involved as a consumer or consumer representative in implementing or evaluating Standard 2 then please contact us.
What do you think needs to be included in the next version of Standard 2? If you have ideas about what could be changed or added to the Standard to strengthen consumer engagement then please get in touch.

In November 2014 the Commission released a report on research it has done into Standard 2.
Health Consumers NSW Strategic Planning Day

Our Management Committee and staff met in February for the first time for a whole day to talk about our strategic goals and direction for the future.

Outcomes of the day will form the basis of our next strategic plan which will be published in the next Update!.
Report about transport for people with chronic diseases

Non-emergency health transport makes a significant difference to the lives of people living with cancer or undergoing treatment for chronic kidney disease in NSW. For many of these people it is a lifeline. However, there are gaps in the current system which result in inequities in access to these services for those who need it most. Read more
We run a Chronic Disease Network and are involved in other chronic disease consultations. If you are interested please contact us.
Consumers out and about

Meeting with Commonwealth Health Minister's advisors 

Anthony Brown, our Executive Director, joined Networking Health NSW (NHNSW), to meet with Commonwealth Health Minister Sussan Ley’s advisors in Canberra on 4 March 2015. 

We were invited to be part of this NSW delegation to Canberra to ensure that health consumers are at the centre of any conversation. We thank our colleagues at NHNSW for the opportunity to be part of this delegation.

Patient reported measures workshop
NSW Health' Integrated Care Strategy aims to bring the delivery of health services together around health consumers and their needs. Three integrated care demonstrator projects are currently running in Western Sydney, Central Coast and Western NSW Local Health Districts.
The Agency for Clinical Innovation (ACI) is in the process of developing tools to measure how well these projects are achieving their goals. These Patient Reported Measures seek to assess consumers’ health outcomes as well as their experiences of being part of these projects.
Mary Potter and Paul Caleo have represented Health Consumers NSW at ACI Patient Reported Measures Workshops. Mary spoke about her own experience as patient in an address called “Outcomes that matter to me”. Mary's story helped maintain the focus on health consumers and their health outcomes throughout the day.

Open vacancies - have your say

Health Infrastructure NSW is seeking consumers with experience of radiation therapy

Health Infrastructure NSW plans and delivers all health infrastructure projects in NSW with a value of $10m and over. As part of their role, they also update the Australasian Health Facility Guidelines which are used by all projects to plan health facilities.

They are currently looking for consumers with past or present experience of radiation therapy. Health Infrastructure NSW is seeking an insight into how the environment impacts on patient's experience, satisfaction and care. You will most likely be involved in telephone interviews.

If you want to provide input and feedback please contact Jenny Green, AusHFG Project Team, on (09) 9978 5488 or

Outsourcing Medicare claims

The Community and Public Sector Union (CPSU) is concerned that the Commonwealth Government is planning to outsource Medicare payments to the private sector. This could mean that Medicare claims are processed by a private company, instead of Medicare staff.

It also means that Australians’ medical and financial data could be made available to private companies. If you want to find out more about this and sign a petition to stop it, you can go to

For the latest on general Medicare changes see this Sydney Morning Herald article.
Nation’s largest diabetes conversation

Federal Minister for Health, The Hon. Sussan Ley, is calling on Australians to have their say as part of the nation’s largest conversation about the best ways to prevent, treat and cure diabetes. 

There is a public consultation, including a survey, on the Department of Health’s ‘Consultation Hub’ website. You can contribute to help guide the federal Government’s development of a National Diabetes Strategy until 17 May.
Life Saving Drugs program - review's public consultation outcomes now online

Outcomes from the Life Saving Drugs program review’s open public consultation phase that ran from 11 August to 10 November are now available online.You can view the submissions on the review’s consultation page.
Upcoming events
Health Consumer Representative Training – registrations now open
Are you a health consumer representative on a board or committee of a health service in NSW?
Do you want to build the capacity of health consumer representatives in your health service?
Health Consumers NSW is running our comprehensive 
two-day training for health consumer representatives on Monday 15 June and Monday 26 June from 9.30am to 3.30pm at our offices located at 280 Pitt Street, Sydney.
The training is designed for people who currently represent the needs and experiences of health consumers within health services in NSW, as members of boards or committees. The sessions are suitable for both experienced and new consumer representatives and offer practical tips for improving effectiveness in this role.
We look at the skills and characteristics needed to be an effective consumer representative as well as the importance of knowing how to network, ways to recognise and deal with conflict, meeting procedures, negotiation strategies, and how to communicate positively.

Places are filling fast for this popular program so contact us if you would like to register.
The fee is $350 per person for our Organisational (Voting) Members and Health Services. We encourage health services to cover the cost of this training for health consumers, as part of their investment in consumer engagement.
Health consumers who wish to do this training and are not affiliated with any health service or consumer organisation should contact us directly.
If you want to find out more, call Karen Filocamo on 0400 055 110 or email You can also call HCNSW on (02) 9986 1082.

Vocational Graduate Certificate in Consumer Engagement

There are still place available for our Graduate Certificate in Consumer Engagement training. We are offering the certificate, in partnership with the Health Issues Centre in Melbourne, for the first time in Sydney.

Dates: 7 to 8 May and 25 to 26 May 2015 
Cost: $2,800 incl GST
Location: York Conference Centre, Sydney

For more information contact us on (02) 9986 1082 or

I want paper

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

If so, please write to us - or HCNSW, Suite3/Level 8, 280 Pitt Street, Sydney NSW 2000 - and we will post you a printed version from now on. 
BEING in the country - Recovery conference 2015

The Recovery Conference is an annual statewide event run by BEING. It is an opportunity for people with lived experience of mental illness to learn from each other by sharing stories and skills. 

When: Wednesday 27 May 2015 from 10am to 3.45pm
Where: West Diggers Club, Kable Ave, Tamworth NSW 

The Recovery Conference is an event dedicated to answering questions and facilitating discussions around the subjects of mental health and wellbeing. Consumers are given the chance to connect with one another, to hear about personal experiences from a panel of consumer speakers and to engage in workshops facilitated by consumers and consumer advocates. 

Registration and information 
Family Planning Discussion and Information Session - Haemophilia Foundation of NSW

You are invited by The Haemophilia Foundation of New South Wales to an informal Family Planning Information and Discussion session on 29 April 2015 at the Glebe Town Hall from 6pm to 8pm.

Guest speakers are Ronald Fleischer, Genetic Counsellor at the Royal Prince Alfred Hospital, and Janan Karatas, Genetic Counsellor at IVF Australia.

Registration and information
Stone chips to silicon chips: Australia's Indigenous digital divide

Peter Radoll is the speaker at the next University's of Newscastle New Professors Talk.

When: Wednesday 29 April 2015, 6.15pm to 8.30pm
Where: Newcastle Museum, Newcastle NSW

In our ever-changing technological world, Indigenous people are increasingly at risk of being left behind.

Research shows us that 60 percent of Australians look for health information online. So the digital divide also affects how much and the kind of health information Indigenous people can access.

Professor Radoll will share his journey to becoming Australia's leading Aboriginal researcher in information and communication technologies, and explore the digital divide that separates Aboriginal and Torres Strait Islander peoples from the rest of Australia.

Registration and information

Unicorn Foundation Sydney Cocktail Party 2015

The Unicorn Foundation invites you to their annual Sydney cocktail party to help raise awareness and funds for Neuroendocrine Tumour (NETs) patients and research.

When: 16 May 2015 at 7pm
Where: Ivy Ballroom in Sydney

Registration and information

The Confident Board Member: Legal and Review Tips for People Who Govern NFP Community Organisations

This training, run by New South Wales Council of Social Services (NCOSS) is designed for those who govern a not-for-profit community organisation (committee members, board members, directors) as well as managers or senior employees (who work directly with the board or have similar legal duties as officers of the organisation). 

When: Dates in May, June and July
Where: NCOSS meeting rooms, Williams Street, Woolloomooloo, NSW

Registration and information

A word with ... Yvonne McMaster

Every Update! we talk to someone involved with the health consumer movement. Today: Yvonne McMaster, a tireless palliative care activist and HCNSW individual member.
Yvonne McMaster picture
Yvonne, how did you get involved in health consumer advocacy?

I am a retired palliative care doctor. I had a support group for people with advanced cancer and they alerted me to the fact that funding in NSW had been cut for the palliative care service which I had worked for. Nobody else was doing anything about it. I then learned that palliative care in NSW had been underfunded for decades and that rural and regional NSW was much worse than metro.

Why is palliative care so important to you?

I know how bad things can be for people with major illnesses and also how much palliative care can do to help. It is the most rewarding job you can possibly do.
What are the three main tips you can give consumer representatives who want to petition the government or are just starting out?

Yvonne in action1. Governments respond to very large community pressure, or media pressure, or persistent pestering. Get a big community meeting, get it written up with photos, get onto the TV or radio where the interviewer has to also ask the Health Minister.

2. When someone writes to their Local Member about a concern, that letter goes to the Minister’s office, then to either the Local Health District or to the Health Department. People have to explain why it is a problem. A lot of letters can help to change things. Don’t give up. Get more people to help. Work hard at it.
3. Use social media. Start a Facebook page. Get onto Twitter. Work them both every day.
Is there something not a lot of people know about you that you think really helped in your advocacy work? 

I really love generating excitement. I love working with people to do that.

If you could suggest just one read about the topic of palliative care or dying to our readers, what would it be?

Can I suggest two? The first is an especially good blog from a palliative care doctor. It is short enough but full of meaning  and great understandings about what it is like to work in palliative care. Warning: there is one confusing thing. It talks about hospice because hospice in the US is about their unique and very good community palliative care service for the last six months of life.
And then I recommend the book Still Alice, about dementia. It really lets one understand what it is like to have dementia.


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