April 2016

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2016 National Palliative Care Week

Four (4) out of five (5) deaths in Australia are caused by chronic illness, but there is a misconception that only cancer patients can access palliative care.

During 2016 National Palliative Care Week (22-28 May), Palliative Care Australia (PCA) will highlight how palliative care can help people with chronic illnesses to live well.

People with chronic illnesses often have more than one chronic illness which affects their health in different ways. The theme "Living well with chronic illness" addresses the need for all people with advanced chronic illness to access palliative care, in order to help them have a better quality of life.

PCA encourages all Australians to use National Palliative Care Week as a conversation starter – get together with those closest to you and celebrate life (have a meal or a coffee) and talk about death. 

For ideas and advice on how to start discussions with loved ones and events happening in your area, visit the campaign website.

HCNSW runs a Palliative Care Network. Contact us if you would like to get involved.

Personal and consumer stories
Out of sight, out of mind

"People want to hear that you're better, not that you're still ill." Emily Beardall shares her story about her sudden relapse with M.E (Myalgic Encephalomyelitis - an infectious neurological disease) and the loss of human connection she felt just as swiftly.
Why are the long term effects of cancer so rarely talked about?

Since being diagnosed with bilateral breast cancer 12 years ago, Cordelia Galgut, opens up about the long term effects she suffers from despite successful treatment.
Before I kick the bucket, I want to say thank you

Patients don’t always get a chance to tell people when and how care is superb. John D Townsend explains why he needs to say it now. 
Hangry in the Hospital

Amalia Cochran MD demonstrates the importance of self-care for caregivers in health and the irony in which this workplace culture condemns staff who practise it.
News and current affairs

Towards a 21st Century Vision: Consumers as makers and shapers in health care

Australia’s healthcare system needs to be more transparent and accessible to put consumers at the centre of health decision making, according to a new report.

A roundtable of over 35 health experts hosted by The George Institute for Global Health and the Consumers Health Forum of Australia (CHF) has called for a range of changes, including the development of a National Vision for Australia’s Health 2025 to set out the principles of consumer-centred health care.

“Australians should be taking a more decisive and active role in their own healthcare and to achieve this we need to innovate in the health system, and provide consumers with the tools to make that happen. Consumers must be the makers and shapers of the health system rather than just the users and choosers,” CHF’s CEO, Leanne Wells, said.

The George Institute’s Executive Director Vlado Perkovic added “By empowering consumers to live healthy lives and take an active role in health care decisions, we will have a more responsive and cost effective health system. We need to transform the financial drivers in health care from the current rewards for treatment of illness to incentives for restoring or ensuring wellness.”

The George Institute and CHF have issued a joint report: Putting the consumer first: Creating a consumer-centred health system for a 21st Century Australia with eight key recommendations from the roundtable. It includes calls for a range of health data and statistics to be made more widely and publically available to allow consumers to make a choice.

- Read full CHF and The George Institute media release

Further reading
- SMH opinion piece: The problem ingrained in our health system: patients don't come first

- Joint report: Putting the consumer first: Creating a consumer-centred health system for a 21st Century Australia

NMHRC Partnership Project: Delivering safe and effective test result communication, management and follow-up
The quality and safety of patient care can be put at risk if pathology and medical imaging test results are not adequately followed up. For example, diagnoses may be missed and patient may experience ineffective clinical care. Health information technologies (IT) play a key role in the communication and follow-up of test results.
Researchers at the Australian Institute of Health Innovation (AIHI) in partnership with South Eastern Area Laboratory Services (SEALS) and the Australian Commission on Safety and Quality in Health Care (ACSQHC) are leading a world first five-year study combining the use of evidence-based practice, health IT and consumer engagement to make test result management IT systems more effective, sustainable, safe and person-centred.
Leading the study is Associate Professor Andrew Georgiou (AIHI) who said consumer engagement is paramount in translating research into practice.
Developing a person-centred approach to pathology testing promotes a philosophy of doing with rather than doing for. Through this approach the researchers seek to enhance consumers’ contribution to test management processes by ensuring that consumers are involved in all stages of this innovative research project.

By collaborating with consumers throughout the project stages, the research team can identify and articulate key patient/consumer perceptions, views and concerns related to the introduction of the Australian My Health Record (myHR). The consumers’ perspectives can then inform the design of informational and educational tools to advance consumer engagement.
Health Consumers NSW (HCNSW) has been providing advice during the development of the research proposal. Representatives of HCNSW are also participating in a Stakeholder Forum to engage in an exchange of ideas with clinicians and industry stakeholders to lay a solid foundation for the project.

HCNSW will be involved for the duration of the 5-year project to provide a consumer perspective on findings and ensure that proposed IT solutions incorporate patient and consumer needs.

For more information on the study, visit the AIHI website.
Bowel cancer is not just a man's disease

Bowel cancer is the third leading cause of death in women. But for some reason, a misconception prevails that it’s an old man’s disease. This article by Yasmin Noone tells of one female bowel cancer survivor who learned the hard way that the disease doesn’t discriminate.
Blacktown Hospital Tour

Health Care Consumers' Association takes you on a tour of the new Blacktown Hospital. The Western Sydney Local Health District involved the community in the planning of the hospital and consumers had an influence in the design. The result is remarkable, even winning a gold medal for co-design at the Asia Pacific's premier healthcare conference. Read blogpost.
From Triage to Discharge

Whether it’s an emergency or a planned admission, going to hospital can be anxiety-inducing – not knowing where you’re heading or who will be looking after you. Michael Vagg, Clinical Senior Lecturer at Deakin University, has devised a cheat sheet to guide you
Three elements for the alchemy of change

In this TEDx talk, Mary Freer shares the story behind her "crazy, beautiful, turning point" which sparked the flame that ignited Change Day, and the 3 main lessons she learnt building this ever-growing social movement for improving our health system.
Healthier You: NHS Diabetes Prevention Programme

Up to 100,000 people in England will be offered places on the world’s first nationwide programme to stop them developing Type 2 diabetes. Those referred will get tailored, personalised help to reduce their risk of Type 2 diabetes including education on healthy eating and lifestyle, help to lose weight and bespoke physical exercise programmes. Read more.
Have your say
Patient Experience Symposium - 5 & 6 May
Follow the event online!

Whilst registrations for this highly-anticipated event have reached full capacity, you can still follow the event on Twitter using hashtag: #PEXs2016 and watch the live stream at:
Download the event program for event details.

Have your say on the Nursing and Midwifery Board of Australia’s Codes of conduct

The Nursing and Midwifery Board of Australia (NMBA) sets the national standards, codes and guidelines that nurses and midwives must meet to be registered in Australia. These standards, codes and guidelines provide nurses, midwives, employers and the public with information about the minimum standards required to practise as a nurse or midwife in Australia. The NMBA has commenced a comprehensive review of the Code of professional conduct for nurses in Australia and Code of professional conduct for midwives in Australia.

To inform the review, the NMBA will be holding a number of focus groups across Australia and is seeking 8-12 consumer representatives for the session in Sydney.

The NMBA values your views on the codes of conduct and how they can reflect the expectations of the professional behaviour and conduct of nurses and midwives.  This may be based on your experiences as a recipient of health care from a nurse or a midwife.

When: Wednesday 11 May 2016, 10.00am to 11.30am (morning tea will be provided)
Where: AHPRA NSW office, Level 51, 680 George Street, Sydney

If you would like to participate in the focus group, please RSVP by email to and include: your full name, contact email, area of interest and focus group - Sydney.

Resources and events
The Health Consumers NSW/WentWest Consumer and Community Engagement Model

In a joint project with WentWest, Health Consumers NSW have developed a Consumer and Community Engagement model, which clearly demonstrates how engagement activities contribute to the quality improvement of health care. The aims of the model are to:

1. have a positive impact on consumer-centred care, consumer experience and health outcomes: make an impact, measure it, communicate it

2. work collaboratively with community and stakeholders to identify and communicate the unmet health needs (including the social determinants of health) of Australian communities

3. build the capacity and capability of health consumers to participate in the design, delivery and evaluation of their health care.

For more information about the model and to download the poster and full report, please visit                        

Get certified in Consumer Engagement - back by popular demand!

Due to the overwhelming response to our Graduate Certificate in Consumer and Community Engagement course, we are now accepting expressions of interest for the return of this course later in the year.

This accredited program is designed for people with responsibility for consumer and community engagement. It is relevant for staff in government, private and NGO health services, as well as health consumer and community organisations, including: consumer and engagement staff, quality managers, health service education officers, complaints managers, clinical staff and experienced consumer representatives.

The upcoming course will run over four (4) days on 8-9 September (Thursday-Friday) and 22-23 September (Thursday-Friday), here in our CBD offices.

Please visit the training section of our website for full course information. Enrol now!
A gift for living

In Australia, we have one of the highest rates of bowel cancer in the world. However, if detected early, up to 90% of cases can be successfully treated. 

If you’re aged 50-74 and eligible a free bowel cancer screening kit can be sent directly to your door.

It's a gift that could save your life.

Keeping Australia Alive

100 cameras, 24 hours... a landmark documentary event capturing the Australian health system in one snapshop - telling the story of who we are, what we value and how we live and die.

In case you missed it, you can watch the full series online.

Patient Info portal

Hunter New England Central Coast Primary Health Network also have a dedicated portal of trusted health information called PatientInfo, dedicated to helping patients with diagnosed conditions access up-to-date and evidence based resources.
Register now for upcoming HCNSW training courses

The next round of HCNSW Consumer Representative training will be held on Mondays 20 and 27 June, 2016.

This fully catered, two-day program introduces the concepts and practices of consumer engagement in the NSW health system and is facilitated by two experienced leaders in the field. 

Visit our website for more information and to register.
I want paper

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

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

Did you know you can book us for training that meets your needs?

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

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

Contact us on 02 9986 1082 or to make a booking or enquiry.
Research and academics

Latest edition of BHI Hospital Quarterly

Download the October to December issue of the Bureau of Health Information's (BHI) Hospital Quarterly: Performance of NSW Public Hospitals.

The Hospital Quarterly is series of regular reports that tracks the services provided in NSW public hospitals and the timeliness with which they are delivered. 

Find out how your local hospital is performing by reading the individual profiles of more than 80 public hospitals in NSW.

A snaphot from our twittersphere...
28 AprHealth Consumers NSW @HCNSW
makes a difference to patient experience by providing a voice for health consumers & helping health services to listen

Retweets by Health Consumers NSW

19 Apr - Health Consumers NSW @HCNSW
Prof Grant Russell says Australia's primary health care research needs an urgent check. via @smh

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