August 2015

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Message from the chair

Hi Everybody,

Exciting developments are happening for health consumers in Australia and I find it heartening to finally see conditions changing. Sure, not all is perfect and there is still a long way to go, but the work of the National Primary Health Care Advisory Group shows that things are moving.

The recommendations of this group will have a big impact on how GP services are delivered and paid for, so it is vital health consumers are involved and have a say.

The current proposals aim to improve disease management, coordination of care and equity and patient participation through reforms such as:
  • enrolling people to a single health provider who would coordinate the patient’s multi-disciplinary care needs and
  • establishing defined packages of care for chronic disease. 
I urge all of you to have a look at the discussion paper and consumer factsheet. Please get back to us with any ideas and thoughts you have as we will coordinate a submission from Health Consumers NSW. There is also the option to complete an online survey.

On another note, I would like to thank some of our staff and welcome others. Serena Joyner has left, after finishing her work on the joint Health Consumers NSW and WentWest Consumer Engagement Project. She has done a fabulous job and her most notable legacies are a fantastic engagement model and a toolkit for consumers. Thanks and well done!

Also, albeit a temporary, farewell to our Communication Officer Julia Brockhausen. Julia is expecting her second baby at the beginning of October and will be on a year of maternity leave from early September. In the last year, she has worked hard to set up our communication channels, give us a visual identity and a brand new website (to be live soon). Thank you Julia and we can’t wait to meet your little girl.

Finally a big welcome to Irene Valis, an experienced events and communications professional, who will be replacing Julia during her maternity leave.

I’m looking forward to seeing you at our Annual General Meeting on 16 October in Sydney.

Betty Johnson AO  
News and updates
CC engagement model released with a flurry of activities

It's been launched! Throughout June and July we have been busy introducing our joint HCNSW/WentWest Consumer and Community Engagement Model to the health consumer representation scene through various ways.

The model was launched during a joint Networking Health NSW/HCNSW forum: Improving Health Care Through Consumer Engagement and Participation, in June (also a first), followed up by social media activity and reached a wider audience with a webinar (another first) in July. 

The forum and webinar were both a great success with over 70 people attending the forum and almost 60 participating in the webinar of the model run by Serena Joyner, our former Project Manager of the
Health Consumers NSW and WentWest Consumer Engagement Project.

Sadly, Serena (pictured above right) has left us for now, successfully finishing the project. We would like to thank Serena for her excellent work and hope to see her again in the future. 

We would also like to thank the colleagues at WentWest and we look forward to the future results of our ongoing partnership.

The model can be used to identify and measure how consumer and community engagement contributes to consumer-centred care. It is based on three core concepts at its heart and six best practice strategies that underpin it. The model offers a scaffolding on which to build, review or evaluate an organisation's consumer and community engagement framework.

Please feel free to use and adopt this model in any way that is useful to you. And let us know what you think, we would love to hear your thoughts.

Resources (please note that we soon will go live with a brand-new website and these links will not work any longer. Our homepage URL will stay the same and all resources will be easy to find): full model report, A4 brochure (optimised for printing/optimised for viewing online), A3 Poster, recording of 1-hour model webinar

Western Sydney Mental Health Atlas - a tool to navigate mental health service delivery

Australians living with serious and continuing ill-health face bewilderingly complex health and social care systems. The mental health service system poses some of the greatest navigation challenges. 

The need for deeper knowledge about the mental health system in Western Sydney motivated Western Sydney Partners in Recovery to fund the development of the Integrated Mental Health Atlas of Western Sydney. The aim of this atlas is:

  • to help providers and consumers to navigate the system, by improving their knowledge about the services available in the area
  • to be used as a tool for evidence-informed planning, as it presents a critical analysis of the pattern of mental health care provided within the boundaries of the Western Sydney Local Health District.
"This is a visual tool that I believe is a unique and powerful way to show governments where we need to spend our money," says Allison Kokany, a consumer consultant with WentWest's Partners in Recovery, involved in the project. "It also shows where we are spending huge amounts of money, with inadequate outcomes for consumers."

The atlas was presented at a launch event at the beginning of June where Allison gave an excellent speech on the mental health landscape.

Read Allison's complete speech
Download the Integrated Mental Health Atlas of Western Sydney

Crystal's story: the path to becoming an involved patient

In May, we sponsored four health consumers to attend the inaugural EndoActive conference which was health consumer led and organised. One of the health consumers we sponsored was Crystal Sheumack (second from right). This is her story:

I was diagnosed with stage 4 endometriosis in July 2014. I went in for an investigative laparoscopy because of a family history of Ovarian Cancer and high CA125 levels. I was also suffering from many years of pelvic pain, but just assumed that was normal.  
Shortly after my operation I woke in the recovery room and I wasn't sure what had happened and all I could feel was the most horrendous pain. I remember hearing the staff in the recovery room saying she was full of endometriosis and has had an appendectomy. I had never heard these words as I thought I was a healthy 30 year old and surely there was nothing wrong with me. I soon discovered - through madly googling - what endometriosis was all about.  
Researching endometriosis and finding out exactly what it was sent shock-waves through my system. I went from not knowing last year what the word endometriosis meant to discovering on Dr. Google that there is no cure, causes infertility and it can keep coming back. This was heart breaking and difficult to deal with when you are in your 30's and single. However, after doing lots of research - it was pleasing to know that there are medications/alternative therapies/diets that can help to relieve the pain.

Read the full story

'Stroke Olympics' a day to remember

On 11 June, members of Stroke Recovery Clubs in the Sydney area took part in the second annual ‘Stroke Olympics’ day at the new Royal Rehab in Putney.

Stroke survivors and their carers competed with each other and with Royal Rehab patients in games of quoits, soft darts, concentration, soft ball toss, skittles, dominoes and putting.

Stroke Recovery Association Executive Officer Michelle Sharkey, chief organiser of the day, was extremely pleased with the outcome, especially considering it was members of the newest support group (the Sydney Inner West Stroke Recovery Club) which took out the championship trophy, won in 2014 by the Royal Rehab patients.

“It’s all fun-spirited and friendly competition of course. We just really like to win!”, she joked.

But the true winners on the day were the participants, many of whom left with medals or trophies, huge smiles, new friends and promises to return in 2016.

Keep an eye out for the 2016 Stroke Olympics date by watching the Stroke Recovery Association website at

The association is one of our voting members. Membership of the Stroke Recovery Foundation costs $22.00 ($27.50 family).
Short news
Good bye Julia (for now), hello Irene

Our Communications Officer, Julia Brockhausen (above right) is leaving us for a year of maternity leave at the beginning of September. She is expecting her second bub at the beginning of October and will have to wrangle two kids under three for a while. Who knows - she might wish herself back into the office some days... We would like to thank Julia for the great work she has done in the past year from giving us a visual identity to creating a brand-new website (to be live next month).

Replacing her for the duration of her maternity leave is Irene Valis (above left). Irene is an events, marketing and communications professional with almost 10 years experience in a variety of sectors. She recently worked for the Department of Family and Community Services as the Project Manager of NSW Seniors Week.

Irene is passionate about health and nutrition and is excited about joining the team and helping consumers to find their voice and play a more active role in their personal healthcare. Irene is working three days a week: Mondays, Tuesdays and Fridays. Please contact her for any communication or media enquiries:
First HCNSW graduate certificate in consumer engagement a hit

Our first Graduate Certificate in Consumer Engagement course in Sydney, delivered with the Health Issues Centre in Victoria, has been very successful. 

The four-day course was attended by 14 health consumer engagement professionals who delved deep into the subject matter. As one graduate said: "This course has been informative, challenging and inspiring. Thank you. It will also be great to get accredited."

Jo-Ann Brown from Alzheimer's Australia is another of our certificate in consumer engagement graduates who has recently been awarded a 2015 ‪#ChurchillFellowship. She will be travelling to New Zealand and the US to research effective care programs for people living with dementia in prison. Congratulations Jo-Ann!

We will also hold a workshop/end of year celebration for all our graduates later this year. More details will be announced in the coming weeks.

If you are interested in attending the next certificate course, please contact us.
Cancer Institute and Agency for Clinical Innovation benefit from our training

We ran two of our most recent trainings for the NSW Cancer Institute (photo above) and the Agency for Clinical Innovation (ACI). Listening to what organisations need from our training is one of our priorities and in both cases, we tailored the training to suit the specific client.

We trained up to 20 of the Cancer Institute's consumer and community advisors on how to get their voices heard. The aim was for them to have the necessary information and skills needed and understand their role.

Likewise, we trained the ACI's consumer representatives earlier this month to ensure they have an optimal understanding of their role and the skills and knowledge to support their work.

If you are interested in booking an individualised and/or in-service training course for your organisation, please contact us.
Consumers out and about

Improvement and Innovation Awards

The South Eastern Sydney Local Health District (SESLHD) held their annual Improvement and Innovation Awards in June and they invited us to nominate a consumer to sit on the judging panel for the awards. Consequently, our board member Paul Calleo has been part of the judging panel. 

Being part of these awards has been a great experience. We would like to congratulate all the winners, especially Learning and Growth for Mental Health by Jo Sommer, Vicki Katsifis and Arna Rathja (pictured with our ED, Anthony) who won the Consumer's Pick for Person-Centred Care award. Thanks also to the SESLHD team who put on these great awards. We hope to be part of it again next year.

ISDM/ISEHC Conference in Sydney, 2015

The International Society for Evidence Based Health Care (ISEHC) and the International Shared Decision-Making group (ISDM) hosted the first joint ISDM/ISEHC Conference at the University of Sydney on 19 to 22 July 2015. The conference organisers made a real effort to ensure that the voice and contribution of health consumers was included by inviting Anthony Brown, Executive Director of HCNSW, to be part of the steering committee.
Anthony was impressed by the efforts that some research funding bodies and academic journals are making to promote consumer engagement and co-design in research. 
Trisha Groves from the British Medical Journal (BMJ) spoke about how they ask authors of articles to explain how they have involved consumers. They also ask consumers and patients to review some articles before publication. Jean Slutzky, from the Patient Centred Outcomes Research Institute (PCORI) in the USA, presented on PCORI’s work in funding research that has demonstrated consumer engagement from the beginning.  Finally, Karen Carey, Chair of the Community and Consumer Advisory Group (CCAG) of National Health and Medical Research Council (NHMRC), took people through consumer involvement in decision making around research funding.

Anthony and Melissa Fox from Health Consumers Queensland (HCQ), held a workshop on consumer involvement in shared decision making during the conference. The workshop looked at some of the ethical issues around consumer involvement choice and was attended by about 30 researchers.
Prof. Victor Montori, from the Mayo Institute, gave the keynote speech about “What is best for me and my family? A union of forces for patient-centred care”. His powerful statements were that “medicine needs to be careful and kind” and that clinicians and researchers need to work in solidarity with patients.

Anthony Brown gave a summary at the end of the conference, reflecting that consumers want clinicians to show care by listening, to show kindness by not hurting us, and to show solidarity through working in partnership.
Bursary winners
Health Consumers NSW offered bursaries to two members to attend the ISDM/ISEHC Conference, Joey O’Reilly and Marika Franklin.
Joey and Marika are both involved in a number of consumer organisations in Sydney and are keen to take information about shared decision making back to the various consumer organisations and groups they work for. Marika is also a PhD student at Australian Catholic University.

Paying for Australia's healthcare:
The future of fee-for-service medicine in Australia

In early August, our board member Glenda Clementson (left) spoke at a roundtable hosted by The George Institute for Global Health in Sydney - Paying for Australia's healthcare: The future of fee-for-service medicine in Australia. 

Following the roundtable, more than 30 healthcare experts and community representatives issued a report calling for immediate changes to the way Australia’s healthcare system is funded.

Professor Vlado Perkovic, Executive Director of The George Institute and the University of Sydney, said “The healthcare system works well for many people, but there are growing issues, especially around funding, that must be addressed to ensure it is sustainable for the next 20 years”.

Read the full article on the George Institute website
Read an ABC article about the report

Pat representing health consumers in rural NSW

HCNSW board member Patricia Le Lievre AM (left) has been busy representing health consumers in rural NSW. Pat’s background and heritage is six generations in the Louth area in Far Western NSW, and her passion is for rural, remote and isolated people to be heard. 

She recently attended the Rural Health Conference in Darwin and presented to the Federal Court of Australia Forum in Sydney on a Competition Tribunal Hearing on the Draft Determination of the Australian Energy Regulator. This has serious implications for essential energy and one of Pat's main arguments was concerning the health implications.

Open vacancies - have your say
Primary Healthcare Advisory Group consultations. Chance to have your say on national developments

The role of the National Primary Health Care Advisory Group is to examine opportunities for the reform of primary health care in improving the management of people with complex and chronic disease.

The group has released a Discussion paper and all those with an interest in the care of patients with chronic and complex conditions are encouraged to access, read and provide feedback on the Discussion paper. The Consumer document and Background document also provide useful information.

Formal feedback should be provided via an Online Survey which is open from Thursday 6 August to Thursday 3 September 2015.

The National Webcast on Friday 21 August 2015 is available to all and is recommended for those who were unable to attend the Public Information Briefings. It is broadcast from 10.00am -11.00am (link to the live webcast).

Are you a person with disability or care for one? Have your say on the NSW Health Disability Inclusion Action Plan

NSW Health believes people with disability have the same rights to choose the way to live their lives, to access the same opportunities and to enjoy the same benefits of living and working in our society. 

They are committed to ensuring NSW Health services are accessible, which means disability inclusion is a top priority.  In line with this commitment, they are currently developing a Disability Inclusion Action Plan 2016-19. 

In September, there will be an opportunity for people with disability in NSW to tell NSW Health what would create real improvements for them in using the health system, and provide input to the NSW Health Disability Inclusion Action Plan. If you are a person with disability, a family member or carer of a person with disability, we invite you to register your interest in taking part in the consultations by emailing
Public Consultation on Draft Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research

The National Health and Medical Research Council is reviewing the Ethical guidelines on the use of assisted reproductive technology in clinical practice and research, 2007 (the ART guidelines). 

The Australian Health Ethics Committee (AHEC) and the Assisted Reproductive Technology (ART) Working Committee are overseeing the review. They have released the DRAFT Ethical guidelines for public consultation. Copies of the consultation document are available from the NHMRC Public Consultation website.

The draft guidelines provide ethical principles that must inform the conduct of clinicians and the development and use of procedures in ART clinics. These ethical principles are supported by practical guidelines on topics such as:
  • use and storage of human eggs, sperm and embryos
  • specific situations such as fertility preservation, surrogacy, preimplantation genetic testing, the collection and use of eggs and sperm from persons who are deceased or dying, and the use of stored eggs, sperm and embryos after the death of a person
  • information giving, counselling and consent requirements.
Comments are particularly invited on the following issues:
  • sex selection for non-medical purposes
  • compensation of Australian women for the reproductive effort and risks associated with donating their eggs
  • establishment of an Australian donor egg bank.
Submissions close 5.00pm, Thursday 17 September 2015.
Do you live in Sydney? Have you recently used a hospital or health service in your community?

Have you spent a night or more in hospital, had a a day-procedure or used a community health service (not a GP) in Sydney lately? The Australian Commission on Safety and Quality in Health Care (ACSQHC) wants to hear about your experience using any of these services.

They are holding three focus groups in August and September for people who have:
  • stayed at least one night in hospital within the last 6 months
  • had a day-procedure in the last 6 months
  • attended a community-based health service during the last 6 months.
Your input will help to develop questionnaires which patients will use to have their say in improving health care in Australia.

The hospital stay focus group is on Monday 31 August 2015 in Sydney. More information
The day-procedure focus group is on Thursday 3 September 2015 in Sydney. More information
The community-based health service focus group is on Friday 4 September 2015 in Sydney. More information

For further information or if you would like to attend a focus group, please contact the ACSQHC Patient Experience Team at
Cancer patients and partners needed for input

The Ingham Institute for Applied Medical Research has a deadline of Monday 31 August to find Australian cancer patients and partners that are willing to be involved in the final stage of their crucial study Coping-Together, designed to help cancer patients and their partners cope. If you have been diagnosed with cancer and are receiving or planning to receive treatment call Dr Levesque on 1800 104 597 or email to register for the study.

Read SMH article about the study
Health literacy research being carried out by ACT Health and the University of Canberra 

The aim of this study is to find out how easy or hard it is for people to talk to health care professionals, find their way around the health system and manage their own health. The project aims to learn about how you find, understand and use health information, and how you manage your health and interact with doctors and other healthcare providers.
To complete the Understanding Health and Healthcare Questionnaire please click on this link: The survey will take between 10 and 20 minutes. 
The Lung Foundation Australia is looking for your feedback.

Are you a patient or the carer of someone with a lung disease? If so, please consider filling out the 2015 Patient Survey being run by the Lung Foundation Australia.
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 3 November and Monday 10 November 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. 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 that will pay their fee 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.
Second HCNSW webinar promises to be interesting

After the success of our first webinar, we are running a second on Monday 14 September. The speaker will be Dr. Nicola Dunbar, Director for Strategy and Development at the Australian Commission on Safety & Quality in Health Care, who will talk about the current Standard 2 review. Mark the date in your diary and keep your eyes open for a HCNSW alert with more content and registration details.
Save the date for our Annual General Meeting

HCNSW Annual General Meeting this year will be on Friday 16 October in our offices at 280 Pitt Street, Sydney. All members are invited to attend and we are currently contacting potential speakers for an afternoon address. Look out for your invitation which should arrive in your inboxes soon.
Workshop and end-of-year celebration for our training and certificate graduates

All graduates of our trainings and the graduate certificate in consumer engagement are invited to a workshop and end-of-year celebration on Friday 4 December.

This will be an informal networking event which will include a presentation on health consumer engagement by Lynda Johnson (SWS LHD Consumer and Community Participation Manager) and Dr. Sally Nathan (School of Public Health and Community Medicine, University of NSW).  They will be talking about the research Sally has done on effectively engage consumers and community involvement in health care.

We will send out more information closer to the date but if you are interested in attending, please send us a quick line via email.
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. 
Do surgeons get paid the right amount?

Should they be trained like pilots and have black-box recorders in operating theatres? Is the one who charges the most necessary the best? These curly questions – and a whole lot more – are up for discussion next month by a panel of Australian and international experts on health, law, media and politics.

Hosted by ABC TV's Tony Jones, the RPA Public Lecture, on Friday 4 September, will see former High Court judge Michael Kirby, media personality Mikey Robins, Macquarie University Professor of Media Catharine Lumby, former NSW Health Minister Carmel Tebbutt, visiting US Professor Tim Pawlik, RPA surgeons Michael Solomon and Paul Bannon, and RPA Chief Executive Dr Teresa Anderson grapple with your best cerebral curveballs.

The lecture will be held at the Kerry Packer Auditorium on Johns Hopkins Drive at RPA from 1.00pm to 2.30pm and is open to all so get your questions ready.
Nominations open for 2015 NSW Human Rights Award

Human rights activists across Australia are encouraged to nominate now for the NSW Human Rights Award, with entries closing on Friday, 21 August 2015.

The NSW Human Rights Award pays tribute to a person who has made a meaningful and lasting contribution to the advancement of human rights. The NSW Government supports the tireless efforts of individuals who have demonstrated a commitment to improving the lives of those less fortunate and this Award will provide an opportunity to recognise an exceptional individual in this field.

The winner of this Award will be announced at a special ceremony hosted by the Hon. John Ajaka MLC, Minister for Multiculturalism, on Tuesday 22 September 2015.

Click here to download a copy of the entry form. For phone inquiries, please call Multicultural NSW on (02) 8255 6769.

Youth Opportunities funding round now open

Up to $1 million is being made available to non-government organisations and local councils in NSW for youth-led and youth-driven community projects that have a positive youth development focus.

The Youth Opportunities program provides one-off, time-limited grants of up to $50,000 to each successful project. Application close 5.00pm on Monday 31 August 2015. For more information about the program and how to apply visit:
Health law seminar: Dealing with death in health and aged care

Are you interested in hearing from experts in the field about dealing with death in the health and aged care industry – including advance care directives, coronial inquests and euthanasia? If so, come along to the next Health Law Seminar Series led by ACHSM, AHHA and Holman Webb. 

Date:   Wednesday 2 September
Time:   5.30pm - 8.00pm
Venue: The Portside Centre
            Level 6 (Lobby) of Symantec House
            207 Kent Street, Sydney
Cost:    Free

Register here.

A word with ... Heather Topp

Every Update! we talk to someone involved with the health consumer movement. Today: Heather Topp, a Buddhist Minister, advocate of 'respect' in healthcare and HCNSW individual member.

Heather, why health consumer representation? 

I became a very strong activist in terms of health consumers after my husband’s death by suicide while an inpatient in a private hospital.  

You are a Buddhist Minister. What does Buddhism mean to you and how does it help you in your health consumer representation work?

As a result of my husband's death, I began my own journey of healing - first taking refuge in Buddhism and my chaplaincy and then becoming an ordained interfaith minister in 2009. I am the first Buddhist Coordinating Chaplain in a public hospital in NSW and the first Interfaith Coordinating chaplain in a public hospital in Australia.  

My Buddhist practice helps me make sense of things that I feel are unjust or require advocacy. I “lovingly release what I can’t change” by practicing prayers and mantras. By having no attachment to an outcome, I am more able to focus on and find a solution. More importantly, it allows me to have greater capacity for compassion by listening to a person’s narrative and leaving them with a sense of being heard. I like being able to find solutions rather than getting caught up in problems.

Exploring avenues together with a person who may have had difficulty allows them to feel more empowered and in most instances can be very healing. People can see an outcome they participated in. 
I am also a civil marriage celebrant and wedding officiate. These life-celebrations are my 'internal  balance or self-nourishment'. Celebrating other peoples' happy events is the perfect balance to my advocacy and chaplaincy work (I am also a NSW Disaster Recovery Chaplain. We are called to floods and fires within the State, my last call-out was to the Martin Place siege).

We vividly remember your talk about human rights and how they refer to health rights during our last AGM. What is the most important aspect about that link to you?

The word “Respect” is one of the most important points. It is wonderful to see that finally this, along with rights and choices (patient centred care), is a more empowering way to co-create and allow health consumers to be part of their own journey. It simply leads to much better health outcomes.
What makes you so passionate about the topic?

My heart goes out to people who feel dis-empowered by the health system or who are in a situation where there is disrespect over religious beliefs. I coordinate prayers for peace with all other major faiths. 

We noticed that you sign emails with ‘with metta’. What does that mean? 

With metta is a Sanskrit term – "in loving kindness". But my favourite signing is Namaste, a word with an equally wonderful meaning. The short version is, "I bow to the divine in you". 

If you could suggest just one read to our readers. What would it be?

The Tibetan Book of Living and Dying by Sogyal Rinpoche -  the most interesting aspect of this book is, that by being aware of your own morality, it allows you to embrace life in a fuller sense as nothing is left undone on an emotional or spiritual level. By that I mean your family, friends, acquaintances - they all know how you feel about them, all know that they matter to you and they are a blessing. 


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