March 2016

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Stay super. Beat diabetes.

Did you know...about 350 million people worldwide have diabetes, a number likely to more than double in the next 20 years?

The World Health Organisation (WHO) is focusing 2016 World Health Day on diabetes because:

1. The diabetes epidemic is rapidly increasing in many countries, with the documented increase most dramatic in low- and middle-income countries.

2. A large proportion of diabetes cases are preventable. Simple lifestyle measures have been shown to be effective in preventing or delaying the onset of type 2 diabetes.

3. Diabetes is treatable. 

The main goals of the World Health Day 2016 campaign are to increase awareness about the rise in diabetes and its staggering burden and consequences; and to trigger a set of specific, effective and affordable actions to tackle diabetes. Please visit the campaign website for more information.

Personal and consumer stories
To Friends and Family Who Aren't Sure What to Say

Elise Graham confronts the elephant in the room and gives friends and family the low down about what to say to loved ones with a chronic illness. She reminds us all how no good deed, no matter how small, goes unnoticed. You don’t have to be perfect — just be present.
Undiagnosed RA (Rheumatoid Arthritis): Living with random agony for no discernible reason

Having RA, and being diagnosed with RA are two completely distinct things. Jonathan describes the feeling of belonging he felt finally diagnosed with Rheumatoid Arthritis after 9 years on the merry-go-round. Some may call it “doctor shopping” but in cases like Jonathan's it was “a desperate act of survival”.

The medical meat market is a disgrace

Last year began Bruce Haigh's serious exposure to the medical profession, support staff and ancillary services in Australia. Whilst the procedure itself was a success, the network surrounding it was dysfunctional and heartless.
Ally vs HLH

A heart-wrenching story from the mother of Alexandra Rebecca Green, who suddenly lost her daughter to the rare, relenting and life-threatening condition, hemophagocytic lymphohistiocytosis (HLH).
News and current affairs

My Health Record roll-out a step forward for Australia

The new measures to accelerate roll-out of the My Health Record, the national electronic health records system, is an important step forward for Australia’s health, says the Consumers Health Forum.
The Chief Executive Officer of the Consumers Health Forum, Leanne Wells, said that the trials in the Blue Mountains and North Queensland of the “opt out” approach to My Health Record, were a vital test of the eHealth system. The current policy has been to leave it up to individuals to sign on for the electronic patient record and that has resulted in a slow take-up.
“The virtue of the “opt out” approach in which people would be automatically enrolled unless they specifically decline, will be a faster development of a digital health record for Australians, delivering greater benefits to patients and doctors sooner,” Ms Wells said.
“We welcome the Government’s renewed push on My Health Record. Consumers have been waiting a long time for the advantages of easily accessible electronic information about their health care”.
“We are well into the digital age in the way we go about other every day activities such as banking, telecommunications and online shopping.   It is timely that we reap the benefits of the role that digital innovation can add to our health and care”    

Read full media release

Could a sugary drinks tax improve Australian diets?

Dr Belinda Reeve, lecturer at the University of Sydney asks, "Does Australia need a sugar tax too?".

Next year Britain will levy a tax on soft drinks containing more than five grams of sugar per 100 millilitres, as part of efforts to contain rising levels of childhood obesity.

The announcement prompted Jamie Oliver to post a video on Facebook encouraging other governments to follow suit, and telling Australia and other countries to “pull your finger out” on soft drink taxes.

Should Australia introduce a sugary drinks tax? Would a tax be an effective obesity prevention measure? Or would it just be a slow and costly way of raising the ire of the food industry?

Australians drink a lot of soft drinks. Around one third of Australians drink about a can of soft drink a day, making Australia one of the top ten soft-drink consuming countries in the world. Soft drink consumption among young people is particularly concerning, with around 47 percent of children (aged between two and 16 years) consuming sugar-sweetened beverages (SSBs) every day.

Read full article

More reading:
- Experts comment on the UK's sugar levy
- Sugar sweetened Aussies
- Jamie Oliver urges Australia to 'pull your finger out'

Young self-harm patients tell of harrowing hospital treatment

This article by Melissa Davey reveals that some young self-harm patientsare being treated for their wounds without anaesthetic. Young people have told stories of being abused and judged by emergency workers, in the first comprehensive report into self-harm among Australian youth.

Michael Clarke joins Campaign for Pain

Former international cricketer and captain of Australia Michael Clarke, is spearheading a chronic pain awareness campaign run by Painaustralia and consumer members the Australian Pain Management Association and Chronic Pain Australia, to make pain a national health priority.

The campaign coincides with the release of a new survey "Australians in Pain", which reveals 68 percent of people with chronic pain are unable to perform daily tasks or participate in social activities because of loss of sleep due to pain, while 50 percent believe their pain negatively impacts relationships and work.
More Australians can stay healthier and out of hospital – here’s how

Each year the Australian government spends at least A$1 billion on planning, coordinating and reviewing the care of people with chronic diseases, such as diabetes and heart disease, in general practice.

Yet there are more than a quarter-of-a-million hospital admissions for health problems that potentially could have been prevented by better primary care for chronic disease. Read more

Learning to die - death doulas tell their stories
The first moments of life are usually met with excitement and celebration. But what happens at the other end? SBS talks to two death midwives about the transition from life to death.
Have your say
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.


Citizen-scientists needed to complete a questionnaire to find the cause of MND

The ALS (Amyotrophic Lateral Sclerosis) Quest research group at The University of Sydney is looking for risk factors in the environment that may trigger motor neurone disease (MND). A questionnaire has been developed about these risk factors for people with MND, and for every person with MND, two people who do not have MND are needed to take the questionnaire, so that the groups can be compared.

Help this research group learn more about potential causes of MND by completing the online questionnaire, "ALS Quest".  The only requirement for participants is that they be aged 18 years or over.

The questionnaire takes about 60 minutes to complete, and can be undertaken in multiple sessions. No details that could identify you are requested.

More information about the study, and a link to the questionnaire, can be found at  

If you have any questions, please email:  

The Centre for Primary Health Care and Equity at UNSW in partnership with Sydney and South Eastern Sydney LHDs and Central Eastern Sydney PHN have established a primary and community health cohort based on the 45 and up population living in the central and eastern Sydney region and linked to hospital and primary care data sets.

The project team are now seeking a consumer representative for its advisory committee. The first meeting will be held in mid May where the committee will start to identify research questions and areas to investigate with the updated data set.  If you live in or work in Central/Eastern Sydney it would be a bonus but not a necessity.

If you are interested in being nominated for this committee, please email HCNSW at: and provide your full name, contact details and a short description as to why you wish to be involved.

Expressions of interest close Friday 15 April, 2016.
Resources and events

CONSUMER ENGAGEMENT within NSW Local Health Districts (LHD)

Hospital networks are funded by state governments and in NSW they are called Local Health Districts (LHDs). There are 15 Local Health Districts in NSW and these operate public hospitals, clinics and community health services.

We are pleased to say that every LHD has a dedicated Consumer Participation Manager (or equivalent) who is 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, Health Consumers NSW (HCNSW) has made it easy. We have put together a list of Consumer Engagement contacts for all LHDs and housed it all in the one place within our Consumers Toolkit on our website. Get in touch with your local consumer engagement network today.
Brain tumour Support and Education forum - Friday 6 May

As part of Brain Cancer Action Week, Brain Tumour Alliance Australia is hosting a free forum for carers, patients and family members of persons living with a diagnosis of a brain tumour.

Allied health professionals and researchers are also welcome but the focus this year is on patient issues.

Dr Brindha Shivalingham and Dr Ben Jonker will be the key speakers.  Latest medical treatments and ways to make lifestyle changes following the diagnosis of a brain tumour will be discussed throughout the day with plenty of time for discussion. Both malignant and benign tumours will be covered.

When: Friday 6 May, 10.30am - 3.15pm
Where: Wesley Mission Centre, 220 Pitt Street, Sydney (public transport access via Town Hall station)
Cost: FREE
Lunch provided

Register now and a copy of the program will be send to you by email.

The Primary Health Network for Western Sydney have developed a Healthy Western Sydney portal containing information and resources by local health professionals for the whole community. There are also culturally appropriate resources specifically designed for Aboriginal and Torres Straight Islander people, as well as people from culturally and linguistically diverse communities.
Interactive Body Map - what really gives you cancer?

The team at The Conversation have designed an interactive body map to creatively demonstrate the evidence on proven cancer causes and the factors that can be minimised or avoided to decrease the risk of developing certain cancers.

Music on the Brain

Could the soundtrack of your life bring back fading memories? In this episode, ABC's Catalyst takes you inside an extraordinary new program, revealing how personalised playlists can re-awaken the brains of people with dementia.

Register now for upcoming HCNSW training courses

The next round of Consumer Representative training will be held in our Sydney offices on Thursday 21 and 28 April 2016.

This fully catered, two-day program introduces the concepts and practises 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.
Get certified in Consumer Engagement - hurry places are filling fast!

HCNSW has once again partnered with the Health Issues Centre in VIC to bring their Graduate Certificate in Consumer and Community Engagement course to Sydney.

This accredited program will be run over four (4) days on April 28-29 (Thursday-Friday) and May 12-13 (Thursday-Friday), 2016.

The graduate certificate 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.

Please visit the training section of our website for full course information and details on how to register. Places are filling fast - enrol now!
Guide to the NSQHS Standards for community health services

The Australian Commission on Safety and Quality in Health Care has released the Guide to the NSQHS Standards for community health services to support community health services implementing the National Safety and Quality Health Service (NSQHS) Standards.
The NSQHS Standards are designed to drive improvements in safety and quality in health care nationally. The release of this Guide for community health services promotes a consistent and shared understanding of the Standards. The development of the guide and accompanying electronic monitoring tool has been a collaborative process with community health stakeholders nationally. The guide has also been piloted with 35 community health services.

Download the NSQHS Standards for community health services
Strengthening patient and public participation in primary care commissioning

NHS England has published a new Patient and Public Participation Policy. The policy sets out NHS England's ambition to put people at the heart of everything it does and outlines how the organisation will work with patients, and the public, to support them to influence health services.
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
Health status and risk factors of Australians with disability 2007–08 and 2011–12 

Australians with disability are still significantly more likely to report having poor health than those without disability, according to a new report released by the Australian Institute of Health and Welfare (AIHW). 

The Health status and risk factors of Australians with disability 2007–08 and 2011–12 report examines how health-related factors affect the health status of Australians with disability at the national population level.
Infographic: a snapshot of hospitals in Australia

This interesting infographic provides an overview of hospitals in Australia in the case of admissions, performance and funding.

A snaphot from our twittersphere...
16 MarHealth Consumers NSW @HCNSW
love seeing all the pledges coming from the heart of the health system today and putting the passion in compassion!

Retweets by Health Consumers NSW
Leanne Wells ‏@LeanneWells63 Health shaping up as an #HealthElection16 issue. Private health insurance reform a must @sussanley @CHFofAustralia


25 MarHealth Consumers NSW @HCNSW
The patient-centred medical home model: what does it mean for primary health care in NSW?
Become a HCNSW member - it's free to join!
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