May 2015    

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Dying to talk; talking about dying won't kill you

National Palliative Care Week (NPCW) runs from Sunday 24 to Saturday 30 May 2015. This year's theme is: Dying to talk; talking about dying won't kill you. NPCW is an annual awareness raising week organised by Palliative Care Australia to promote better palliative care for all Australians.

Australians do not like to talk about death and dying, it is one of the last taboos. But death happens to us all and to have the best death possible, we need to plan and prepare for it.

During National Palliative Care Week, Health Consumers NSW encourages you to talk about dying and your options for palliative care.

Death and dying are a normal part of life. Australians need to feel more comfortable talking about what their wishes and needs are as they approach end of life. You need to be comfortable and confident to ask for the care you want.

Use National Palliative Care Week as a conversation starter – get together with those close to you, celebrate life (have a meal or a coffee) and talk about death.

  • How do you want to be cared for?
  • What values are important to you?
  • What do you want when you die?
  • Have you considered if you wish to be buried or cremated?
  • Do you want to pass away at home or in a hospice?
  • Have you established a power of attorney?

So, during National Palliative Care Week; take a moment to think about death. How you want to die and how you want to be cared for to live well.

And visit the Palliative Care Australia website to get involved and spread the word. You can download posters and social media imagery and text. There is also a calendar of national and local events.

Health Consumers NSW runs a Palliative Care Network. If you are interested in being involved please contact us at or (02) 9986 1082.

Personal and consumer stories
The untapped power of the patient-doctor alliance

Jen Morris is a patient advocate and researcher in healthcare quality and safety at the University of Melbourne. She feels strongly that cooperation is required if we want to make more impact in Canberra. 

What are the benefits of a patient-doctor alliance and how do we overcome our differences?
Three questions to ask your surgeon before being operated on

This infertility survivor, battling endometriosis and recurrent pregnancy loss, blogs to try to help others with a similar journey. In this entry she discusses the three questions to ask your surgeon before being operated on.
GP is still the best job in the world

Despite political inference, wasteful awareness campaigns, misleading advertisements, poor evidence, and ridiculous media stories, general practice is still the best job in the world. GPs witness the life stories of individuals and families unfolding in real time. Margaret McCartney explains.
Women making a difference

We came across this blog about women leaders in social change movements and (not surprisingly) a lot of the people here are health consumers advocates (including some people we know very well). 
A doctor discovers an important question patients should be asked

Mitch Kaminski has worked as a family physician for 30 years. Here he describes how he discovered the most important question to ask your patient. “What are your goals for your care?”
News and current affairs
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

Primary Health Networks Government media release
Croakey opinion piece

Find out more about HCNSW’s work in primary health care at our forum on 3 June

Review of Medicare - what does it mean?

In late April, Health Minister Sussan Ley announced new Medicare reviews that could lead to some of the biggest changes to the Medicare benefit system since its introduction.

There are three major elements of the Government’s plan: to review Medicare benefits, explore better ways to deliver primary care and to tighten Medicare compliance. They offer the prospect of fundamental improvements that can update Medicare to match available advances in medicine and health practice.

“We congratulate the Government for moving on from the dead end proposals for a co-payment. Now the reform plan can consider the real potential of contemporary health care to revive Medicare’s power to meet the needs of today’s chronically ill and of those with serious but treatable conditions,” the Chief Executive Officer of the Consumers Health Forum, Leanne Wells, said.

“That these are being considered at the same time as the Government introduces the Primary Health Networks, presents a once in a generation opportunity to swing Medicare towards a patient-centred system. Too often patient-focus has been made much of while the reality has remained that health services have been structured to meet the priorities of providers."

HCNSW welcomes the Government’s planned inclusion of consumer and patient representatives in the reviews. We will keep you informed about opportunities for your input.

CHF press release
ABC Explainer: What the Medicare shake-up means
ABC News: GPs outline plans for funding system overhaul in lieu of scrapped Medicare copayment

Winter is coming

Winter is coming and so is the serious problem of antibiotic resistance. NPS MedicineWise has launched their latest awareness campaign on the issue of antibiotic resistance and are calling on you to help to fight antibiotic resistance every day in May.

The World Health Organization has recognised antibiotic resistance as one of most “primary global health threats today”. A UK report has estimated that a continued rise in antibiotic resistance by 2050 would lead to 10 million people dying every year, with a financial cost to the world of up to US$100 trillion.” (

The reality is that antibiotics are losing their power. Because of the overuse and misuse of antibiotics, some bacterial infections that were once easily cured with antibiotics are becoming harder to treat. Australia is one of the biggest contributors to antibiotic resistance, but we are also becoming a global leader in making change.

You can help preserve the miracle of antibiotics by being part of the solution. Become involved. Take the pledge to fight antibiotic resistance. Spread the word on social media or even make a short film for Tropfest

ICPCM Declaration on Person-and People-Centred Integrated Healthcare for All

The International Alliance of Patients’ Organizations (IAPO) supports the key themes and principles outlined in the Geneva Declaration on Person-and-People-Centred Integrated Healthcare for All (PPCIC) released by the International College of Person-Centred Medicine (ICPCM) Board in May last year

Health Consumers NSW welcomes the decision and supports the call to individual and collaborative action that is included in the Declaration. We look forward to working with IAPO, ICPCM and other partners on enhancing PPCIC for people in all countries around the world and NSW.

Achieving patient-centred healthcare at every level and in every community requires the support and collaboration of patients and patients’ organisations, policy-makers, health professionals, service providers and health-related industries. Policies and practices must be agreed, acted upon, monitored and evaluated. Learning and effective-practice examples should be shared and publicised to illustrate the benefits and outcomes of patient-centred healthcare.

Read the IAPO press release

Budget delivers $485 million to resuscitate eHealth

A common plea we hear from consumers is the frustration they feel when they have to repeat key information about themselves, their medical history, and current medications to multiple clinicians.

The difference of the renamed myHealth Record is Health Minister Ley's decision to go with an opt out policy. This will mean everybody will get registered unless they actively oppose signing on. The current opt in approach has proved very slow to take hold.

“All health consumers deserve the benefits that information technology can offer their health care, benefits that are now taken for granted in other sensitive areas like personal banking,” says the Consumer Health Forum’s Chief Executive Officer, Leanne Wells.

Read the Consumer Health Forum's press release
Read the Government News article
Click here to see the Consumer Health Forum's overall budget analysis
Blast from the past: Successful health consumer information 70 years ago

A very belated Happy 108th Birthday to Theodor Seuss Geisel!  Better known as Dr. Seuss, Theodor (born on March 2nd, 1904) was not always a children’s book author.  During the Depression and through World War II he found success as a political cartoonist, commercial illustrator, and filmmaker.

Towards the war effort, which he heartily supported, Geisel produced posters for the United States Treasury Department’s “Squander Bug” campaign (“Starve the Squander Bug. Buy More War Bonds” in 1942. 

By that point Dr. Seuss had already authored four children’s books.  Then in 1943 as an enlisted Captain in the Army he collaborated with another recruited children’s book writer, Munro Leaf (the author of The Story of Ferdinand) and illustrated a 32-page pamphlet:  This is Ann: she’s dying to meet you.

See the whole brochure at the Smithsonian Library website 
National review of mental health programs and services

The report of the National Review of Mental Health Programmes and Services has been released. There are 25 recommendations in the report which guide a detailed implementation framework of activity over the next decade. Health Consumers NSW welcomes the release of the report and supports the person-centred approach it advocates. We hope the recommendations in this report will be implemented so that the whole needs of the person can be met: the right care, in the right place and right time.
The report also reminds us that good mental health “can also come from life within a local community through social contacts and participation in employment, education, clubs and other activities” (the Social Determinants of Mental Health). 
Highlights from the Sydney University Dean's reception: Our ED Anthony Brown and our chair Betty Johnson recently went to Sydney University's Faculty of Health Sciences Dean's Reception. Here the e-brochure: New thinking, new healthcare and the video of the reception from the day.

Readability of online Australian health information - failed: A Deakin University study has found that Australian health web sites are too difficult for the average person to read. More here

Two-thirds of people in the US believe they could be making more decisions about personal health and wellness on their own: According to a new US national survey, people are taking greater ownership of their health, demonstrating knowledge and resourcefulness when it comes to healthcare-related matters. Could these results be similar in Australia? Read the full story here.

Income inequality also bad for health: We know that living in a poor community makes you less likely to live a long life. New evidence suggests that living in a community with high income inequality also seems to be bad for your health. A study from researchers at the University of Wisconsin Population Health Institute examined a series of risk factors that help explain the health (or sickness) of counties in the United States. More

CEC -  Partnering with Patients to Improve Quality and Safety challenge recognised by British Medical Journal: The Clinical Excellence Commission's moves to mount a patient centred care challenge were published in the British Medical Journal. This work was done together with the patient advisory committee. It also reflects the work of many clinicians and health staff who champion the need to base all their work on the needs and the wishes of their patients. This collaboration is realised in the accompanying editorial.
Have your say

Call for views on AHPRA regulatory principles

National Boards and the Australian Health Practitioner Regulation Agency (AHPRA) are seeking feedback through an online survey on the regulatory principles that were launched in July last year.

They are inviting members of the public, health consumers, health practitioners and all interested persons to share their views on their regulatory principles. The survey has 11 questions and should only take about five to ten minutes to complete.

Complete the survey by 9am Monday 18 MayMore information

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.
Scope of Clinical Practice Discussion Paper - comment now!

The State Scope of Clinical Practice Unit (SSoCPU) is a new state-wide unit established as part of NSW Health. The SSoCPU is currently undertaking a project to assist NSW Health organisations to appropriately define the scope of clinical practice of their employed and contracted senior medical and dental practitioners. Appropriately defined scopes of clinical practice will lead to improved care and safety for patients being treated by senior medical and dental practitioners in NSW Health hospitals.

SSoCPU is seeking feedback on the issues in their Discussion Paper from health consumers before 15 June 2015. You can read the Discussion Paper or a brief executive summary and submit your feedback to Jennifer Chapman, Project Manager, via email: or phone (02) 9887 5656.

Public consultation on review of the Registered nurse standards for practice

The Nursing and Midwifery Board of Australia (NMBA or National Board) is releasing, for public consultation, papers on the review of the Registered nurse standards for practice.

Please complete this structured response consultation to provide feedback on the draft revised Registered nurse standards for practice by close of business on Friday 3 July 2015.

The NMBA encourages all stakeholders - nurses, midwives and health consumers, to review and respond to this consultation. More information including a background paper is available on their current consultations page.

Back pain? Have your say!

Have you started experiencing low back pain recently or do you currently suffer with low back pain? The UPWARD study are recruiting people with low back pain into their study being carried out by the University of Western Sydney and University of New South Wales.

The UPWARD study is a long-term study that will observe participants over 12 months in order to understand why some individuals get better after hurting their back while others do not. The UPWARD study will investigate the role of brain plasticity, along with biological changes in the spinal cord, hormonal changes and stress, in the development of persistent low back pain. This study is the first longitudinal study of its type . It is anticipated that findings from the UPWARD study will lead to better timed and targeted therapies for people with low back pain.
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
Events and resources
Health Consumer Representative Training – registrations now open
Are you a health consumer representative on a board or committee of a health service in NSW? Or do you want to build the capacity of health consumer representatives in your health service?
We are running our comprehensive two-day training for health consumer representatives on Monday 15 June and Monday 22 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 to be effective in this role.
We look at the skills and characteristics needed, 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.

The fee is $350 per person for organisations and health services. We encourage services to cover the cost of this training for their health consumers. Health consumers who wish to attend and are not affiliated with any health service or consumer organisation can contact us directly.
Download the registration form in Word or PDF and send to For any queries call Karen Filocamo on 0400 055 110 or 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 significantly increases 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  includes the launch of a new health consumer engagement framework.

More information and registration
Happening on 29 May, #IHMayDay15 is a day when Aboriginal and Torres Strait Islander Peoples share their knowledge and stories about health and examine policy issues and community concerns on Twitter. Non-Indigenous Australians are encouraged to participate by listening and RT-ing. The event is led by @LynoreGeia and @OnTopicAus and hosted by the public health blog Croakey (@croakeyblog), in collaboration with @IndigenousX.

NDIS Opportunities and Possibilities: Delivering the NDIS in rural and remote areas
This workshop is being held on Sunday 24 May 2015 from 9.15 am to 3.30pm at the Hilton Hotel, Darwin. Cost: $297 (gst inc). It will be run by disability experts as part of the 13th National Rural Health pre-Conference events program.The workshop is designed to give you the tools and resources to succeed with the NDIS. register for the workshop 

BEING in the country - Recovery conference 2015
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. Wednesday 27 May 2015 from 10am to 3.45pm at West Diggers Club, Kable Ave, Tamworth NSW . Registration and information
I want paper

Would you prefer to receive The Wrap 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 send you a printed version from now on. 
New app for clinicians: A better way to care

The A better way to care: Actions for clinicians resource is now available as an app for mobile devices. The aim of the A better way to care app is to provide clinicians with a quick access guide to the pathway for identifying and providing safe and high-quality care to patients with cognitive impairment in hospitals.

The app focuses on the following questions:
• Why is being alert to dementia and delirium important?
• Who should I be concerned about?
• What should I do?
• What does being alert mean to me?

Download the iPhone app
Download the android app
More information and resources for A better way to care
Social media and me - a video for health professionals
The Horizons Group of NHS Improving Quality has put together this short video for health professionals (and others) on how to use social media. Worth a watch.

Crash course in leveraging social media for health care improvement
And more social media information... Here a slideshow delivering a crash course on leveraging social media for health from the University of Oslo and the British Columbia Patient & Safety Quality Council.

Factsheet: Why do I even need this test?
The Consumer Health Forum has produced a handy factsheet for consumers who want to find out more about why they have been asked to have a diagnostic test and what it could involve – so that they can make an informed choice about it. More information about informed consent, including a short video.

Getting to Grips with Standard 2
In March, we successfully held our inaugural Standard 2 workshop for health services and consumers. Here the presentations from the day: Presentation by Dr Nicola Dunbar - Director Strategy and Development, Australian Commission on Safety & Quality in Health Care; Presentation by Jess Crause and Laila Hallam - Community Participation Manager, Sydney LHD and Consumer Representative; Presentation by Elizabeth Harnett - Australian Commission on Safety & Quality in Health Care Surveyor; Presentation by Prof Cliff Hughes - CEO, Clinical Excellence Commission.

Breastfeeding videos have released a series of short breastfeeding videos to help mothers breastfeed their babies.

A free guide for teenagers who have a parent with a mental illness
The COPMI national initiative has produced a guide specifically for young people from 12 to 15 years of age who have a parent with a mental illness. You can order it free of charge or have a look at a preview here.
Do you know that you can book us for consumer training?
We run 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 (partnering with consumers) obligations. Contact us on (02) 9986 1082 or to make a booking.
Research and academics
Admitted patient care 2013–14: Australian hospital statistics
released: 19 Mar 2015, author: AIHW - media release

The patient experience movement moves on
Jason A. Wolf PhD The Beryl Institute / Patient Experience Journal

Patient experience established: One year later
Geoffrey A. Silvera Pennsylvania State University, Jason A. Wolf PhD The Beryl Institute / Patient Experience Journal

Reframing the work on patient experience improvement
Jocelyn Cornwell The Point of Care Foundation

The power of patient ownership: The path from engagement to equity
Zal Press Patient Commando Productions, Dawn Richards Canadian Arthritis Patient Alliance

Meaningful and effective patient engagement: What matters most to stakeholders
Mandy Bellows Alberta Health Services, Katharina Kovacs Burns University of Alberta, Karen Jackson Formerly of Alberta Health Services, Brae Surgeoner Alberta Health Services, Jennifer Gallivan Alberta Health Services

Patient partnership in quality improvement of healthcare services: Patients’ inputs and challenges faced
Marie-Pascale Pomey University of Montreal, Hassiba Hihat University of Montreal, May Khalifa University of Montréal, Paule Lebel University of Montréal, André Néron University of Montréal

So much more than a “pair of brown shoes”: Triumphs of patient and other stakeholder engagement in patient-centered outcomes research
Amanda Brodt, M.P.P. AcademyHealth, Christine K. Norton, M.A. Minnesota Breast Cancer Coalition, Amy Kratchman The Children's Hospital of Philadelphia

The Children’s Hospital of Philadelphia Family Partners Program: Promoting child and family-centered care in pediatrics
Amy Kratchman, BA The Children's Hospital of Philadelphia, Darlene Barkman, MA The Children's Hospital of Philadelphia, Kathy Conaboy, BA The Children's Hospital of Philadelphia, Anna de la Motte, MSed The Children's Hospital of Philadelphia, Rachel Biblow, MSW The Children's Hospital of Philadelphia

Considering shared power and responsibility: Diabetic patients’ experience with the PCMH care model
Olena Mazurenko MD, PhD University of Nevada, Las Vegas, Sheila Bock PhD University of Nevada, Las Vegas, Catherine Prato National University, Margarita Bondarenko University of Nevada, Las Vegas

Patient satisfaction reported by in-visit and after-visit surveys
Rukiya Wongus University of Maryland Faculty Physicians, Inc, Nicholas H. Schluterman University of Maryland School of Medicine, Department of Epidemiology and Public Health, Sharon Feinstein University of Maryland School of Medicine, Department of Family and Community Medicine, Inc., Nihkolle McGirt University of Maryland School of Medicine, Department of Family and Community Medicine, Deborah R. Greenberg University of Maryland School of Medicine, Department of Epidemiology and Public Health

Measuring patient experience in a safety net setting: Lessons learned
Nina Shabbat Thresholds, Katy Dobbins Thresholds, Sonja Seglin Thresholds, Kristin Davis Thresholds

Weighting patient satisfaction factors to inform health care providers of the patient experience in the age of social media consumer sentiment
Blaine Parrish George Washington University, Amita N. Vyas George Washington University, Grace Douglass George Washington University

Patient centered infertility care: The health care provider’s perspective
Alana Streisfield Mount Sinai Centre for Fertility and Reproductive Health, Nurun Chowdhury Mount Sinai Centre for Fertility and Reproductive Health, Rebecca Cherniak Mount Sinai Centre for Fertility and Reproductive Health, Heather Shapiro Mount Sinai Centre for Fertility and Reproductive Health, University of Toronto

Patient complaints as predictors of patient safety incidents
Helen L. Kroening North Western Deanery, Bronwyn Kerr Central Manchester University Hospitals NHS Foundation Trust, James Bruce Royal Manchester Childrens Hospital, Iain Yardley Imperial College

Cancer patients’ experiences of error and consequences during diagnosis and treatment
Henriette Lipczak Danish Cancer Society, Liv H. Dørflinger Danish Cancer Society, Christine Enevoldsen The Capital Region of Denmark, Mette M. Vinter Danish Cancer Society, Jeanne L. Knudsen Danish Cancer Society

Usefulness of a patient experience study to adjust psychosocial oncology and spiritual care services according to patients’ needs
Lynda Belanger CHU de Québec and Université Laval, Francois Rainville CHU de Quebec, Martin Coulombe CHU de Quebec, Annie Tremblay CHU de Quebec

Building national consensus on experiences of care
Anna Baranski Macmillan Cancer Support, Neil Churchill NHS England, Sophie Staniszewska RCN Research Institute, Warwick Medical School, University of Warwick

Variations in the patients’ hospital care experience by states’ strategy for Medicaid expansion: 2009-2013
Edmund Becker Emory University, Kenton Johnson Dept of Health Policy and Management, Emory University, Jaeyong Bae Northern Illinois University, Jason M. Hockenberry PhD Department of Health Policy and Management, Rollins School of Public Health, Emory University and National Bureau of Economic Research, Ariel C. Avgar University of Illinois

Health information technology: A key ingredient of the patient experience
Matthew Werder Hennepin County Medical Center

The patient portal and abnormal test results: An exploratory study of patient experiences
Traber Giardina Houston VA HSR&D Center for Innovations, in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center and the Section of Health Services Research, Department of Medicine, Baylor College of Medicine, Varsha Modi Houston VA HSR&D Center for Innovations, in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center and the Section of Health Services Research, Department of Medicine, Baylor College of Medicine, Danielle Parrish Graduate College of Social Work, University of Houston, Hardeep Singh Houston VA HSR&D Center for Innovations, in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center and the Section of Health Services Research, Department of Medicine, Baylor College of Medicine

Creating and integrating a new patient experience leadership role: A consultative approach for partnering with executive and clinical leaders
Denise M. Kennedy Assistant Professor of Healthcare Systems Engineering, Mayo Clinic College of Medicine and Patient Experience Administrator, Mayo Clinic Arizona

Book Review: Being Mortal: Illness, Medicine and What Matters in the End
Sue Sutton Tower Strategies
A snaphot from our twittersphere...
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