November 2016

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Message from the Executive Director

Hello Everybody,

Welcome to our November issue of Update – the newsletter for members of Health Consumers NSW. It has been a very busy time since our last newsletter
I would like to thank all of our members for your ongoing support and assistance. You can read below about some of the things our individual members have been doing, as well as innovative and exciting new developments from our organisation members. Especially the first ever Hackathon for Health Consumers organised by Chronic Pain Australia.
We held a very successful AGM in November. You can read all about our busy year in our Annual Report, details below! 

On a final note, I know you will all join me in welcoming back Julia Brockhausen who returns from maternity leave after giving birth to a beautiful baby girl, Malia. I would like to extend a big thank you to Irene Valis who has looked after our communications in Julia's absence. Irene has worked very hard on numerous HCNSW publications such as our Wrap newsletters, Annual Reports and our new general brochure. Irene is moving onto a new assignment, expecting her second baby in December! We wish her and her family all the very best.

News and updates

Annual General Meeting 2016
From top left to bottom right: photo 1, Dara Cansdell and Irene Valis; photo 2: Maria Lorenzo and Annette Booth; photo 3: Paul Caleo and Craig Cooper; photo 4: Elaine Todd and Betty Scott

On Friday 21 October, HCNSW members, the board and staff met at our offices for the 2016 Annual General Meeting of Health Consumers NSW. Patricia Le Lievre AM, our Deputy Chair, welcomed everybody and started the proceedings. Our Executive Directory, Anthony Brown, provided an overview of the year and Treasurer Dr John Leyden gave a financial report.

Afterwards, everybody enjoyed the networking opportunity and catch up as well as coffee and cake.
Our 2015/16 Annual Report now available

After a successful and exciting year, we now have published our 2016 Annual Report. If you want to know what we have worked on during the last year, download it right now or contact us for a hard copy.

Download the Annual Report
New branding assets for HCNSW

In the last few months, we have been working on a new phase in our branding. We have given it a makeover by placing images of consumers and health staff we work with front and centre, embodying what we are all about. This involved organising a photoshoot with willing HCNSW members and LHD health staff in consumer engagement.

The first example can be seen in our new general brochure (pictured left) and the 2015/16 Annual Report. We would like to thank all those involved for their time and agreeing to be part of this project and a special thanks to Dony Rodriguez of Mr Rodriguez photography ( for your generosity in providing your photography services.

Help us spread the word

Help us spread the word about us! If you think your patients, friends, carers and partner organisations should know about us (and become a member - it's free) and you have room to display our brochure, please contact us. We will send you a couple of copies to spread among your affiliates.The new one-page brochure provides a brief overview about who we are and what we do.
We need your feedback!

Our 'new' HCNSW communications plan has been implemented and running for about two years and we want to know what you think.

First off, we would like you to take five minutes out of your busy schedules to have a look at our website - - and answer the questions in this short survey. If you are a regular on our site, no need to look at it again.

We value and appreciate all the feedback!

Partnership with NSW Agency for Clinical Innovation (ACI)
The Agency for Clinical Innovation (ACI) is one of the ‘Pillars’ of NSW Health. They work with consumers, clinicians and health managers to design and promote better healthcare for NSW.
Over the past few months HCNSW Training Officer, Karen Filocamo and Executive Director Anthony Brown, have been facilitating workshops with consumers and ACI staff. Topics have included:
  • Busting Myths about Consumer Engagement
  • Anything but a Committee: Methods and Tools for Engaging Consumers
  • Being A Consumer on an ACI Network, Committee or Project (webinar)
One more is planned for this month with the motto: Staff and Consumers working together.
The workshops have been very popular with consumers and staff and provided opportunities for consumers from various ACI networks and committees to meet and share their experiences.

Our work with ACI is not only improving engagement with this important government agency, it is also an example of how partnerships between consumers and health staff results in better outcomes, guidelines and ultimately, better care.
Co-hosted workshop with Sydney Alliance

In July, we partnered with the Sydney Alliance to host a workshop around consumer and community organising called "Community Organising and Health: Los Angeles, Seattle and Sydney".

Participants from Sydney came together in Pitt Street connecting digitally with the international locations.

Sister Maribeth Larkin from Los Angeles inspired everybody with her stories about how low-income Hispanic and African American communities organised their communities for power and better healthcare.

Sydney Alliance leaders then talked about how a perennial healthcare issue in the Inner West which had been ongoing for over 20 years was fixed in a matter of 18 months through local organising - diverse organisations being brought together and everyday people using their citizen power.

The workshop closed with a lively discussion about how community organising could change the power relationship in the NSW healthcare system for the common good.
EndoActive Wins Prime Award!
In September, Lesley and Syl Freedman, founders of EndoActive AU & NZ and HCNSW members, were thrilled to accept a prestigious 2016 Prime Award for Best Public Health Initiative - Highly Commended for the EndoActive SHARED PERSPECTIVES Conference and associated Educational Resource.

Sylvia was also recently named Young Leader in the 100 Women of Influence Awards - what an amazing achievement!

On behalf of our Board and fellow members, we congratulate both of you on your wins - a testament to all your hard work in advocacy for awareness and treatment of Endometreosis and helping to educate sufferers, loved ones and health professionals about this mysterious illness.
Training update

Health Consumer Representative training

In the last financial year we have run 24 training programs and workshops which is a huge increase on the previous 2 years. This demonstrates how well our training is received throughout health and non-government sectors and we have been pleased to provide new programs for organisations with whom we have worked previously. 

This year there has been a focus on providing training outside the Sydney area, which has seen us deliver sessions in the following areas since May:
  • Warrawong (2)
  • Ballina
  • Tweed Heads
  • Campbelltown
Our last 2 regional locations for this year will be in Newcastle and Broken Hill.

We have also seen an increase in requests for staff training, with the aim of supporting health services to develop effective consumer engagement strategies. We believe this is evidence of the strong value placed on consumer partnerships by Local Health Districts and Primary Health Networks across the state.

Our last training program in Sydney this year were held at the HCNSW offices in September. 2017 training dates have been confirmed as follows:
  • Thursdays 16 and 23 February
  • Saturdays 20 and 27 May
  • Tuesdays 22 and 29 August
  • Mondays 13 and 20 November
If you are interested in learning more about what we cover in our training for consumers and staff, please call Karen Filocamo on 0400 055 110 for more information, or visit our Training page to book.
Graduate Certificate in Consumer and Community Engagement returns

This year has seen a great demand by health services staff seeking formal training in Consumer Engagement under the Graduate Certificate in Consumer and Community Engagement, which is pleasing to see.

This four-day course is aligned with the NSQHS - Standard 2 and is designed for quality managers, clinical team leaders, consumer engagement coordinators and staff, government officers and others seeking training and national accreditation. Experienced consumer representatives are also welcome to attend the course.

After bringing the program up to NSW from VIC for the first time last year, the Health Issues Centre returned in May to hold the training in 2016. The waitlist to get into the course was such that we decided to hold a second round of training which was completed in September.

"The course has been exactly what I needed to give me frameworks and tools to continue my work and to assist others to understand why I do what I do." Graduate, May 2016.

There are plans to hold another Graduate Certificate program in 2017. We will keep you posted once the dates are confirmed.
Consumers out and about
First Ever 'hackathon' for Health Consumers of Chronic Pain: Hack4pain

In May 2016, HCNSW supported the Hack4Pain initiative led by Chronic Pain Australia. By bringing together digital technology professionals and end users (people living with chronic pain), the hackathon used a co-design approach to develop an online solution or "app", for Chronic Pain to give to its members for free.

The event saw more than 60 people get involved, forming six different teams. HCNSW provided healthy refreshments for participants to keep energy levels up over the weekend and helped promote the event throughout our network of consumers via newsletters and social media.

The winning team consisted of two developers and two sufferers of chronic pain who created Pain Cools, which is a goal-setting app for sufferers of chronic pain.

Pain Cools provides a peer-to-peer platform for chronic pain sufferers to connect with each other, set goals, and receive rewards. The creators believe “setting an ambitious yet achievable goal is a good way of distracting from the pain and regaining control”.

Well done to all of the organisers and participants for putting on this co-design initiative and helping to reduce stigma of living with chronic pain.
South Western Sydney LHD -  Launch of the Consumer and Community Participation Framework
South Western Sydney Local Health District (SWSLHD) celebrated the invaluable contributions of its community by launching its fifth Consumer and Community Participation (CCP) Framework (2016 -2019), which embraces a philosophy of ‘working with’ rather than ‘doing to’ people.

The new Framework contains resources for consumers, carers, community and health service staff, including information on the engagement processes.

Our Executive Director, Anthony Brown, attended the launch and said, "This framework is an inspiration. Not only does it clearly show what consumer and community participation looks like in South Western Sydney, it was put together by local consumers. This framework practices what it preaches and goes way beyond just ticking a box."

View the CCP Framework and launch video
Tara representing us at the 2016 APAC Forum

Tara Lee, a health consumer representative from Western Sydney LHD, attended the 2016 APAC Forum on behalf of her LHD, us and ACI.

"I was able to network with other consumers and I was grateful for the opportunity to have a consumer host support us throughout the forum. I gained so much knowledge from the other consumers and those involved in consumer engagement, building relationships which are continuing and still feeding back to each other. I feel the consumers highlighted the necessity of consumer engagement and brought our perspectives to the sessions and those we networked with."
"The plenary sessions were motivational highlights, inspiring everyone for "Great Care Everywhere". I felt particularly inspired by the work of Counties Manukau Health with their self-management plan and patient lead support groups, realising the effect that people and people's families have on the outcomes of their health and working with that. The lack of resistance to change that they had from the health service with such fantastic outcomes for consumers and health care really filled me with hope and motivation."

"I have taken that back with me in my role as a consumer representative and I am looking forward to co-designing and collaborating in Western Sydney."
Message from the Board
Cancer Research including consumers wins award

Board member Mary Potter is the consumer member of a team led by Dr Natalie Taylor at Macquarie University undertaking a research project aimed at improving referral and genetic testing rates of patients at risk of Lynch Syndrome.  

Lynch Syndrome is an inherited bowel cancer condition, believed to affect tens of thousands of Australians, but it is extremely under-diagnosed.The team won the award Excellence in Translational Cancer Research 2016 announced at the 2016 Premier’s Awards for Outstanding Cancer Research.
"Everyone should have one"

Board member Lucille Bloch spoke at the Capacity Australia Annual National Conference on Decision Making in Dementia in August. She talked about Advance Care Directives and her personal experience with it.

"It's so important to complete one while you are well and healthy," she said. "You can always change it later and review it but do one now - no matter your age - and discuss it with your doctor, partner, children and family."

More information about doing an Advanced Care Directive

Open vacancies - have your say


Have your say on 'Revalidation' of medical practitioners

The Medical Board of Australia is seeking feedback from the profession, stakeholders and the community about the proposed approach to support medical practitioners to maintain and enhance their professional skills and knowledge and to remain fit to practise medicine. The Board has adopted the term ‘revalidation’ for this process.

The Board wants the process leading to revalidation to be practical, effective and tailored to the Australian healthcare environment.

The Board has appointed an expert advisory group (EAG) to provide it with technical expert advice on revalidation. The Board has asked the EAG to develop one or more models for revalidation in Australia and to provide advice on how to pilot the models so that they can be evaluated for effectiveness, feasibility and acceptability.

The Board has published a discussion paper and the interim report of the expert group. You can join the consultation in a number of ways:

  • have your say in our online discussion
  • take a short survey to provide your views on the approach
  • send your written submission by email or mail
  • read submissions made by others.

The consultation closes on Wednesday 30 November, 2016. The expert advisory group (EAG) and the Board will consider all the feedback received and the EAG will recommend actions to the Board in a final report due in mid-2017.

For full information, including access to the Discussion Paper and Interim Report, please visit the Medical Board of Australia website.

Wanted: Consumer Representative for Community Health Advisory Committee

The Bureau of Health Information (BHI) is looking for a Consumer Representative to join their Community Health Advisory Committee (CHAC). BHI is developing a survey to collect the experiences of patients who are using community health services in NSW.

BHI is establishing an advisory committee to allow for experts in this field to guide the content of the questionnaire and how it is delivered to patients – the CHAC is being formed to provide this advice. The committee will be responsible for providing context about services, to recommend questions to be included in the survey and who the survey will include.

The Consumer Representative needs to have experience in services provided by community health although it doesn't necessarily matter which service. For example, it could be aged care or rehabilitation services delivered to a patient's home or through a clinic in the community. BHI is looking for consumer representatives who have an interest in the integration of many services for their care.

The committee will meet four times in the next six months with the first meeting in early December 2016.

If you are interested in this opportunity, please contact Jason Boyd, Director, Surveys at BHI; Phone Number: 94644469; Mobile Number: 0408295620; Email Address:

More information about this opportunity

Contact the LHD in your area about
opportunities to make difference

LHDs NSWLocal Health Districts or LHDs are hospital networks that are funded by state governments. There are 15 Local Health Districts in NSW and these operate public hospitals, clinics and community health services. 

Every LHD is required to involve health consumers in decision making in various ways. Each has a dedicated Community Engagement Manager (or equivalent) responsible for engaging consumers and working with them to help shape processes and policies.

If you wish to register your interest in being involved as a consumer representative within your closest LHD or to find out more about the way they engage with consumers, we have prepared a list of Local Health Districts on our website to help you get directly in touch with the Consumer Engagement contact.

Upcoming events

The NSW Patient Experience Symposium aims to bring people together to improve the experiences of care for people from NSW. The Symposium provides the opportunity for people to come together to network, learn and share their ideas and work on projects with each other. It provides a forum for people to present innovative work and initiatives aimed at improving care in NSW.

The overarching theme for the 2017 conference is “Communication and connecting people and this will be reflected in the selection of successful abstracts. There is still time to submit an abstract for presentation until COB tomorrow, Friday 18 November 2016. The Organising Committee invites all attendees, including consumers, to submit an abstract for inclusion as a 15-minute oral presentation, 5-minute rapid-fire oral presentation or a workshop.

The event is usually attended by delegates from across NSW Health and by large numbers of health consumers and carers.

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, Suite 3 / Level 8, 280 Pitt Street, Sydney NSW 2000 - and we will post you a printed version from now on. 

A word with ... Dr John Leyden

Every Update! we talk to someone involved with the health consumer movement.

Today: Dr John Leyden, Anesthetist extraordinaire, HCNSW Treasurer and founder of the Unicorn Foundation.

"One might consider it a little ‘odd’ for a health provider to be a passionate health consumer, but I consider it to be a perfect fit."

What was it that got you involved as a consumer advocate?

It was my journey managing and supporting my late sister Kate during her time with a pancreatic neuroendocrine cancer that inspired me. For five years we navigated a health system that was unprepared to provide a young woman with a rare cancer the medical and psychosocial support and treatment that we have come to expect for more common cancers.

Utilising my medical knowledge and immature advocacy skills we were able to access treatment and support that prolonged and improved the quality of her life. This positive experience of health consumer activism inspired me to share and promote the role of ‘well equipped’ health consumers as a part of the solution to improving the delivery of healthcare.

The Unicorn Foundation, of which you are President, aims to raise awareness about neuroendocrine tumours. Rare by nature and overlooked by many in the medical community. Can you tell us more?

The Unicorn Foundation was founded on the principles of offering patient support and education as well as raising awareness and boosting research for neuroendocrine cancers (NET) in Australia. Over the last six years we have become the peak patient body for this rare group of cancers and have patient support groups nationwide. We also have a specialised NET nurse support service and a well-developed consumer advisory committee that represents and promotes the issues surrounding NETs and rare cancers. Our successes have been predicated on the continued engagement of our patients, families and carers.

How does working with HCNSW help you in your advocacy work?

I have been involved with HCNSW for a couple of years. During this time, I have made many friends, gained more understanding and knowledge about what a ‘health consumer’ can be, and hopefully contributed to improving the visibility and utility of the organisation.

This, in turn, has increased health literacy, health advocacy, policy development and the provision of equitable and high-quality healthcare for New South Wales health care consumers. A cause close to my heart.   

If you could suggest just one read about consumer engagement to our members. What would it be?

Our NET patients are my inspiration to improve health consumer engagement and we owe them the opportunity to develop their skills and confidence in becoming potent advocates.

However, I refer to a quote from the surgeon Atul Gawande’s book: Better: A Surgeon’s notes on Performance to encapsulate my feelings about improvement and engagement in healthcare - “Better is possible. It does not take genius. It takes diligence. It takes moral clarity. It takes ingenuity. And above all, it takes a willingness to try.”

Copyright © 2016 Health Consumers NSW, All rights reserved.

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