July 2015    

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Pain ... Let's talk about it

Monday 20 July to Sunday 26 July is National Pain Week.

Feedback from people living in pain has a consistent major theme – it is the invisible burden that we don’t want to talk about, often for fear of the consequences. Let’s break the silence and reduce the stigma of chronic pain. 

National Pain Week events are concentrated in Brisbane and Sydney. People can register to come for a ride on the National Pain Week Big Red Double Decker bus. Its free to come along and there are lots of adventures in store on the bus rides. There is also a one day conference in Sydney at the State Library of NSW on 24th Julyfeaturing an afternoon of speakers, music, displays and discussion. You can also look forward to a Q&A session and lots of displays, including the new “Communication Cards” developed by the NPS Medicinewise team in collaboration with Chronic Pain Australia, to help people living with pain communicate more effectively with their GPs. 

Visit the National Pain Week website for information and to register for events.

Health Consumers NSW is running a Chronic Disease Consumer Network. If you are interested in getting involved please contact us.
Personal and consumer stories
The pressure to be 'ON'

In this blog post, Michelle Roger, a patient advocate living with Dysautonomia, talks about the pressure to be 'on' all the time.

The vast majority of patient advocates work out of love and passion, and receive little to no remuneration for their time.  
A personal end of life care journey

This short but powerful film follows one couple's end of life care journey. It explores the benefits of identifying our dying wishes and sharing them with those we love - and those who may care for us in our final days.

HCNSW runs a Palliative Care Network. Contact us if you would like to get involved.
Why is diabetes (and life) so stressful? 

With any chronic disease - knowing how to destress is essential. In his blog Adam's Corner for diaTribe, Adam Brown writes about diabetes stress and his four personal strategies for overcoming it: Mindset, Movement, Mindfulness, and Morning routine. Not only useful for people with diabetes...
A painful topic: what doctors need to know (according to patients)

GP Edwin Kruys blogs in a 'Doctor's bag' about the Royal Australian College of General Practitioners 'Good GP' television commercial and why he liked it but got it so wrong once he looked at it from a patient's perspective. Includes excerpts from patient's blogs.
News and current affairs
The new Primary Health Networks (PHNs) have taken over operations from Medicare Locals on 1 July. Their role is to plan and facilitate primary health services in their local communities.
“The new PHNs provide an opportunity to strengthen consumer and community engagement in primary health care," said HCNSW Executive Director Anthony Brown. 

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,” he said.

The start of the PHNs has been plagued with issues around naming rights and continuity of providing services.

Articles about naming rights issues: ABC, croakey
Article about service provision problems: ABC

Mount Druitt palliative care best in Australia

Mount Druitt Hospital Supportive and Palliative Care has topped the country, becoming one of just five units in Australia to have met every national benchmark.

It was assessed by the Palliative Care Outcomes Collaboration (PCOC) which measures results and performance across Australia.

The unit, which is a 16-bed short-stay facility based at Mount Druitt Hospital, was recognised for its outstanding delivery in the areas of pain management and the implementation of effective and timely care plans.

The comprehensive service supports the Blacktown and Mount Druitt communities.

Health Consumers NSW is running a Palliative Care Network. If you are interested in getting involved please contact us.

Where are all the blokes? How to reach older men

Providers of community care and day therapy centres need to consider the range of services they offer, and the language and imagery used to promote them, in order to reach out to older men. Men continue to access services far less than women.

In this article from the Australian Aging Agenda has extensively interviewed our very own Executive Director Anthony Brown.

“A big issue is just knowing the services exist, many older men don’t know they are available to them,” Anthony said during Men’s Health Week, which ran from 15 to 21 June.

There is also a perception among older men that community services are feminised, and this is particularly true of day therapy services and home care," he said. While home care provides important services, they are often framed around activities that have traditionally been associated with women’s work, such as domestic assistance.

“Even though these services are an important aspect of care and self-management, they’re not always on the bloke’s radar; they’re not prioritised as much by the older men as by women,” said Anthony.

Full article
Men's Health Week

Dying to Know Day - 8 August

Dying to Know Day (D2KD) is an annual day of action dedicated to bringing to life conversations and community actions around death, dying and bereavement. This year it falls on 8 August.

Did you know that 75 percent of Australians have not had end of life discussions and 60 percent think we don’t talk about death enough? Over 70 percent of us die in hospital though most of us would prefer to die at home and very few of us die with an Advance Care plan (less than 10 percent).

The number of Australians aged 65 and over will double by 2050 increasing our need to plan while well and share our wishes with our loved ones. D2KD encourages all Australians to:
  • develop their death literacy
  • make their end of life plans such as a will and advance care plan
  • share these wishes with their families
  • get informed about end of life and death care options s
  • be better equipped to support family and friends experiencing death, dying and bereavement.
Why not organise an event in your local community, host a Death Cafe or take a personal action such as writing your will or having a conversation with a loved one. To learn how, visit the D2KD website.
New Carer Gateway Advisory Group announced

The Federal Government has announced the members of a new Carer Gateway Advisory Group to lead an initiative to support Australia’s 2.7 million unpaid carers.

The Government announced $33.7 million in the 2015 Budget to build a national carer gateway and to integrate supports for carers to help them get the support they need. The 12-member Carer Gateway Advisory Group includes a mix of experts from service providers, peak bodies and individuals with a lived experience as a carer.

More information

Primary Health Care Advisory Group established

As we all know, Australia's health system is under increasing pressure to provide better quality, affordable and accessible health care. As part of the medicare reforms, the Commonwealth has established the Primary Health Care Advisory Group (PHCAG).

It's purpose is to examine opportunities for primary health care reform to better support patients with complex and chronic illness, including mental health conditions. 

This will involve a national consultation activity with the public, stakeholders and health professionals. The Advisory Group is expected to deliver its report to Government by end 2015. 

For more information including terms of reference and group members, please visit the Commonwealth Department of Health website

Should pain treatments differ between different cultures?

Not all people experience pain the same way; why is it that some people tolerate ritual piercings and walk over hot coals while others run at the sting of a bee or the prick of a needle?  In this interesting article, Bernadette Brady explores how culture and ethnicity influence pain and if treatment should differ for different cultures.

Full article
Have your say

You are invited to participate in an online study investigating the community's attitudes towards depression. You are welcome to take part, whether you have personally experienced depression or not, and even if you do not know much about depression.

The study is being conducted by researchers at the University of Western Australia and you could win a $100 prize for participating. You will initially be asked to enter some demographic information, such as your age and gender and then be asked a series of questions about depression. The questions vary from person to person as they are randomly selected.

Completing the study will take about 15 to 20 minutes. You need to be at least 18 years of age and live in Australia to participate.

Are you interested in assisting South Eastern Sydney Local Health District to improve the health and wellbeing of your community?

South Eastern Sydney Local Health District (SESLHD) is seeking expressions of interest from two community members to join a Community Partnerships Committee, a Committee of the SESLHD Board.

The role of the Committee is to ensure a strategic, collaborative and coordinated approach to community engagement, participation and partnerships across the organisation.

To be eligible, you must live within one of the following local government areas; Rockdale, Kogarah, Hurstville, Sutherland, Botany Bay, Randwick, Woollahra, Waverly or Sydney. You will also need to have experience in community engagement, strong links with members of the community and be willing to donate your time.

You will be required to attend at least four meetings a year. Training and on-going support will be provided to you. People from Aboriginal and Torres Strait Islander and culturally and linguistically diverse communities are encouraged to apply.

Applications should include:
  • a covering letter addressing the selection criteria
  • name and contact details of two referees
  • a brief CV
To submit an application, please contact Amanda Justice, Community Partnership Coordinator at

Further information

National Carers Resources survey

Australian Market Research is conducting a national survey for Healthdirect Australia and the Department of Social Services about services that are available to Australians.

The research is about the different information, services and support that people across Australia access. It will help the Australian Government understand how best to ensure carers have access to the information and support they need. The survey will take 20-25 minutes to complete.

Your Participation

Your participation in this survey is entirely voluntary. You may decide not to answer certain questions, and you may withdraw at any stage. Your name will not be collected or used in the reporting of the results. Your responses to the questions will not be able to be linked back to you.
Resources and events
Our Consumer and Community Engagement Model
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 forum in June, followed up by social media activity and reached a wider audience with a webinar in July. 

The model can be used to identify and measure how consumer and community engagement contributes to consumer-centred care. It is based on the 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 your consumer and community engagement framework.

Please feel free to use and adopt this model in any way it's useful to you. And let us know what you think. We would love to hear your thoughts on it.

Resources: full model report, A4 brochure (optimised for printing/optimised for viewing online), A3 Poster, recording of 1-hour model webinar
Senior Week grants - apply now

The 2016 NSW Seniors Week grants program is opening soon. To receive assistance with funding an event for seniors during 2016 NSW Seniors Week (Friday 1 April – Monday 10 April 2016) go to the Seniors Week website. You’ll find eligibility criteria, the grants terms and conditions, key days for 2016, NSW Seniors Week objectives and some event ideas. Up to $200,000 grant funding has been allocated for events across NSW in 2016.
One of the key focus areas for 2016 NSW Seniors Week is ‘healthy living’ and the NSW government would like to connect seniors with expert advice in this area.

Applications for 2016 NSW Seniors Week grants will open on Monday 27 July and close at 11.59pm on Friday 4 September 2015

Funding grants for women in health care sector 

From 1 July 2015 the National Industry Scholarship Grant Initiative will provide women in the health care sector with grants for leadership development. Grant applications are open to women employed in the health care sector at two levels. Please click on the preferred program link for program and grant application details.

1. Senior level and high potential women leaders can apply for $12,000
individual grants to undertake the Advanced Leadership Program.

2. Emerging and mid-level managers can apply for $4,500 Individual Grants
to undertake the Accelerated Leadership Performance Program.

The National Scholarship Committee advises that interested parties should submit applications
NSQHS Standards - health literacy factsheet

The NSQHS has produced a range of great factsheets in regards to their standards. This Standard 2 factsheet about health literacy explains the concept well.

"Partnerships are essential for safe and highquality health care for individuals, and for the development of better healthcare systems. For partnerships to work effectively, everyone involved in the partnership needs to be able to give and receive, interpret and act on information. The concept of health literacy is at the core of these processes."
New: Acute Stroke Clinical Care Standard
Improving the early assessment and management of patients with stroke is the focus of a new Clinical Care Standard, which was launched on 10 June, 2015 by the Honourable Sussan Ley, Australian Government Minister for Health and the Honourable Jillian Skinner, NSW Minister for Health.

Download the Acute Stroke Clinical Care Standard here.

Additional resources include:

The power of storytelling as a force for transformational change
Here you can find a range of resources that explore how stories are an essential ingredient in transforming health and care. They explain the rationale, how stories can be gathered and, most importantly, how the process puts people at the heart of care.

MindMatters - mental health help for secondary schools
MindMatters is a mental health initiative for secondary schools that aims to improve the mental health and wellbeing of young people.It's a ‘framework’, in that it provides structure, guidance and support while enabling schools to build their own mental health strategy to suit their unique circumstances. MindMatters provides school staff with blended professional learning that includes online resources, face-to-face events, webinars and support.

MindMatters is online and easy to use. Create your free account now.
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. 
'Taking Integrated Care to scale in Western Sydney'
Friday July 24th 2015, 7.30am-3.30pm, Rydges Parramatta. The Western Sydney Integrated Care Program invites you to talk about how to take Integrated Health to scale and make it a reality in Western Sydney? Register here.

HCNSW bursaries to attend Shared Decision Making Conference in Sydney
HCNSW has received two discounted registrations for health consumers to attend the Shared Decision Making Conference next week at Sydney University, from Monday 20 to Wednesday 22 July. If you would like to attend this conference please contact us ASAP.

Healthcare and Social Media Summit 2015
The inaugural Healthcare and Social Media Summit will be held on 1-2 September 2015 at the Brisbane Convention and Exhibition Centre. The Mayo Clinic invites you to share their vision to excite, educate and demonstrate the power of social media to healthcare providers and patients in Australia. Whether you work or are treated in the public system, the private system or both, if you are interested in the power of social media in healthcare, this Summit is for you. See more.
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
Access to health services by Australians with disability 2012
In 2012, 17% of people with disability who needed to see a GP delayed or did not go because of the cost; 20% who needed to see a medical specialist did not go mainly due to the cost; and 67% who needed to see a dentist delayed seeing or did not go because of the cost.

Compared with people with disability living in Major cities, people with disability living in Outer regional and Remote areas had lower use rates of services provided by GPs, medical specialists and dentists as well as coordinated care provided by different types of health professionals. They were more likely to visit a hospital emergency department for health issues that could potentially be dealt with by non-hospital services, and to face barriers to accessing health services.

Download full report
A snaphot from our twittersphere...
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