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March 2015    

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National Close the Gap Day

Equal access to healthcare is a basic human right, and in Australia, we expect it. So what if we told you that you can expect to live almost 20 years less than your next-door neighbour? You wouldn’t accept it. No-one should.

But in reality, Aboriginal and Torres Strait Islander People can expect to live up to 10 to 17 years less than non-Indigenous Australians. Learn more about why the health gap exists.

Working in partnership with Aboriginal and Torres Strait Islander people is one of the critical success factors in addressing the Indigenous health crisis and exactly the sort of approach we at HCNSW stand for. Indigenous Australians need to be consulted, empowered, resourced and supported to address the health issues facing their communities. Success stories from Indigenous communities indicate that properly resourced services in control of the community bring positive change.

Thursday 19 March was National Close the Gap Day. Tell us how you got involved and spread the word about Closing the Gap or what events you visited.

Also check out this online app that let's you compare your health and future with the health and future of a comparable Indigenous Australian. 

Personal and consumer stories

No dignity and respect for older people in health settings

Karen Filocamo is Health Consumers NSW’ Special Projects Officer. After experiencing her mother in law’s struggle with the NSW health system, she felt inclined to write down that experience and share it with others.


 

Marmaduke's story

Marmaduke’s Story highlights the importance of holistic care for all members of families containing children living with potentially life-limiting illnesses. We hear from family members reflecting on the importance of children’s palliative care for childhood cancer patient Marmaduke from Melbourne.

What does community engagement mean to you?

This beautiful video from Health West Partnership in Victoria explores the experiences of community members who partner with organisations to improve health and wellbeing in their community. Beautifully shot, a must-see for everybody who is a - or works with - health consumer reps.
A doctor's Change Day pledge

With this year's Change Day just over, read about the amazing Doctor who first brought the 'Hello my name is...' campaign to Australia and now writes letters to patients, not other doctors.
Look from the outside in: Patient opinion can encourage staff

James Munro, the chief executive of Patient Opinion, explains how the website and service works and why he thinks this sort of bottom-up change driver is so important.
Patient Opinion
Social media is a lifeline for patients with rare diseases

Judy Stone sees firsthand how social media can make a big difference in the lives of teenage sufferers of rare diseases. 
Listen to your patients 

Stephen Wilkens recounts his wife's difficult hospital visit, all due to the doctors not listening to his wife and him.
What a dying patient teaches their doctor

Starla Fitch is a doctor who learns about hope from a regular patient who dies.
News and current affairs

Choosing Wisely launching in 2015

In April, Choosing Wisely will be launched in Australia. The initiative identifies tests, treatments and procedures that are commonly used but can often provide no or limited benefit to the patient.

The campaign hopes to improve conversations about medical tests and other procedures within the medical professions and between health providers and consumers. This will support quality healthcare through appropriate use and improved patient safety.

Lists of tests, treatments and procedures that should be considered or questioned will be developed by participating medical colleges and societies. Choosing Wisely is facilitated by NPS MedicineWise. 

Crikey' s take on the initiative
H
umorous video on campaign



New name for General Practice NSW

General Practice NSW is transitioning to Networking Health NSW. 

"We believe that our new name better reflects the organisation’s increasingly broad based membership and the importance of partnership and collaboration in the development and delivery of primary health care," says Ian Sinnett, Interim Executive Director. 

Networking Health NSW is built on General Practice NSW’s longstanding experience and achievements in advancing health reform through strengthening primary care systems and expertise. 

It continues to provide coordination and networking opportunities across the sector, supporting, strengthening and shaping primary health care in New South Wales.

Private health insurance more expensive
 
Private health insurance premiums are set to increase by an average of 6.18 per cent from April, and consumers are being urged to "shop around" for the best deal.

Health Minister Sussan Ley, who approved the price hikes, said the total benefits paid to private health insurance members grew by over $1 billion – or 7.4 per cent – to about $17.3 billion in the 12 months to December 2014.

She urged consumers to use the Government's independent comparison website to get the best deal.

Full story

 

Taking 'simulated care' to the next level

Aged care residents at a Western Australian facility are playing a hands-on role in the training of nursing students by simulating patient interactions.

The patient-volunteers, both men and women, are authentic real people. They are given a scripted scenario but they also ad lib as their role demands. They simulate problems like a broken hip, diabetes, heart conditions and high blood pressure.

The clinical learning environment for the University of Western Australia students includes a 12-bed ward, general practice and nurse practitioner clinics and a simulated community flat.
Full story

 
The aged care sector is frustrated at its position as the “forgotten child” of the national PCEHR (Personally Controlled eHealth Record System) roll-out and has called on the government to provide clarity over the central client record due to launch this year as part of the Aged Care Gateway.

CEO of Leading Age Services Australia (LASA) Patrick Reid has echoed concerns raised by other aged care sector experts over the development of the central client record, the design of which appears to have deviated from the original plan to either be linked to or be part of the PCEHR.

Full story

Why is it so hard to debunk health myths?

Seventeen years ago, a physician in the UK published a study of twelve children who had been given the MMR (measles, mumps, rubella) vaccine. It implied a scary correlation between the vaccine and autism.

Yet today, surveys show that as many as a third of U.S. parents still believe the discredited allegations.

This has all led to a contentious debate among parents, politicians, and the medical community not only in the US but also here in Australia and the whole world. But why it is so difficult to dispel rumors and debunk myths? 

Full story

Good video about importance of health literacy: Good video about the importance of health literacy for consumers by Inner West Sydney and Eastern Sydney Medicare Locals. However, health literacy and health communication is a two-way street and this video does not acknowledge the complexity of the health system. We need to develop communication advice for clinicians too.

Get the most out of your doctor's visit: Seven tips on how to best tackle a doctor's visit.

 
Have your say
Call for submissions - complementary medicines 

The Expert Panel undertaking the Review of Medicines and Medical Devices Regulation is calling for submissions from stakeholders on the regulation by the Therapeutic Goods Administration of Complementary Medicines. 

The Panel is seeking feedback from stakeholders to inform its thinking. Written submissions are invited on the questions for consideration plus any other relevant feedback. Stakeholders are also welcome to bring to the attention of the Panel other issues related to complementary medicines.

Submissions are due by COB 8 April 2015. 

More information

 

Survey about Chronic Fatigue Syndrome

Federation University, in collaboration with Emerge Australia, would like to examine the health and welfare of people with Chronic Fatigue Syndrome (ME/CFS).

This is your opportunity to have your say about your experience.

We would be enormously grateful if you could take the time and energy to complete this survey. We will use the results of this survey to inform our education and advocacy work.

More information
Go to survey

Research and academics
Professional perspective on involving patients in quality indicators (Germany 2015)
This article suggests that involving patients in developing quality indicators might help to include patient priorities in quality measurement. 

Community participation in remote Aboriginal community (Australia 2015) 
This article describes the evolution of successful innovation to deliver primary healthcare services in remote Aboriginal communities. 

Family engagement in routine primary care visits (USA 2012)
Find out about the benefits of family engagement in primary care consultations.

A patient partnership program in haemophilia care services (Ireland 2015)
This article argues that including patients as partners is an effective method of service evaluation and development, leading to improved care and user experience. 

Nominal group technique for consumer involvement (UK 2013)
Engaging patients in a pain management community-based program using nominal group techniques. 
 
Events and resources
1st EndoActive National Endometriosis Conference

One of our newest voting members, EndoActive, have successfully put together a consumer driven conference for both, women and girls with endometriosis and health practitioners.

Half a million women and girls in Australia have endometriosis and mother-daughter duo Lesley and Sylvia Freedman set up EndoActive Australia & NZ last year to address the lack of information and support for sufferers.

Saturday May 16
Sydney University, Charles Perkins Centre


Early bird registration before 10 April: consumers: $125.00, later: $175.00. Health professionals: $200, later: $250.

More information about the conference 
EndoActive
Facebook

 

11th ADMA Annual National Conference

Themes include: Population health including Indigenous health, Person-centred care; Shared care; Telehealth and Telemedicine; Models of integrated care; Health and social care integration; Consumer Perspective; Quality of care & Evaluation

10 to 11 September 2015
Brisbane Convention Centre, QLD


Abstracts can be submitted for consideration as an oral presentation or poster. Email your abstract to info@adma.org.au by the following dates:
  • Oral presentation abstracts by 5pm AUST EST on 24 April 2015.
  • Poster abstracts by 5pm AUST EST on 4 August 2015.
For more information: click here

 
Clinical Trials Regulation in Australia - Therapeutic Good Administrations's Role
The Sydney Children's Hospitals Network Research Governance and the Better Treatment 4 Kids Network invite you to an information session with Dr Tony Gill (Senior Medical Adviser, Market Authorisation Group, TGA). Tuesday 31 March, 9.30 to 11am. Sydney Children's Hospital: Conference Room 6, The Children's Hospital at Westmead: KRI building, Meeting Room 1 (video conference), Hunter Medical Research Institute: Caves Theatre (video conference).

13th National Rural Health Conference
Program online now. 24-27 May 2015, Darwin Convention Centre, NT. Go to www.ruralhealth.org.au/13nrhc/program to see all the speakers and sessions over the four days.

Australia 2040: CEC Annual Conference
The Cooperative Research Centres (CEC) Program was launched in 1990. On 26 May 2015 you should plan to be in Canberra to celebrate 25 years of innovation and explore the challenges and opportunities of the next 25 years. Be there to learn how research, development and innovation will contribute to Australia’s future.
More information about the conference
Health apps for parents

While the world has been closely watching the evolution of watches, glasses and other wearables as they become connected devices capturing and monitoring our lives, a little start-up in Melbourne, Australia has been focusing on the digital needs of parents.
Carers NSW: Facts sheet about NDIS for carers
 

Carers NSW is developing a set of fact sheets on the National Disability Insurance Scheme (NDIS) specifically for carers. Click on the titles below to access the fact sheets:

1. What is the NDIS?
2. Where do carers fit in the NDIS?
3. How can I prepare for the NDIS?
4. NDIS checklist for carers in NSW
5. Tips from carers on the NDIS (coming soon)
6. Carer stories from the NDIS (coming soon)
7. What if the person I care for is not eligible for the NDIS? (coming soon)
8. What if I have a problem with the NDIS? (coming soon)

These fact sheets are regularly updated and every effort has been made to ensure that the information in them is correct and up to date. 

More information

I want paper

Would you prefer to receive The Wrap as a printed hard-copy via smail-mail 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 - info@hcnsw.org.au or HCNSW, Suite3/Level 8, 280 Pitt Street, Sydney NSW 2000 - and we will send you a printed version from now on. 
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. Training for people interested in becoming consumer representatives coming soon. Contact us on (02) 9986 1082 or info@hcnsw.org.au to make a booking.
A snaphot from our twittersphere...
 
Health Consumers NSW @HCNSW  ·  24 hours ago
"We are all on the same side," Cliff Hughes, CEO CEC. 
 
Health Consumers NSW @HCNSW  ·  Mar 24
"Using the vulnerability of the consumer story as a catalyst for change is soo important. It connects on a human level."
 
Health Consumers NSW @HCNSW  ·  Mar 24
"Embedding consumer partnership is not a project, it's a culture change. And you need leaders who champion it" Dr Nicola Dunbar.
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