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February 2017

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Everyone deserves the chance to be healthy. Close the gap!

16 March is National Close the Gap Day. The aim? To bring people together, to share information and to take meaningful action in support of achieving Indigenous health equality by 2030. With events ranging from workplace morning teas to sports days, school events and public events in hospitals and offices around the country — anyone can take part and make a difference.

Why close the gap?

Equal access to healthcare is a basic human right, and in Australia, we expect it. But in reality, Aboriginal and Torres Strait Islander People can expect to live up to 10–17 years less than non-Indigenous Australians. They also experience higher rates of preventable illness such as heart disease, kidney disease and diabetes (source: Oxfam).

What can you do?

Like so often, good engagement could - and sometimes already is - one of the major influences to turn things around. But that requires a shared understanding of the problem, common goals and clear mutual expectations. It also means a willingness to work together and share power, reduce control and make mutual adjustments (source: Closing the gap sharinghouse).


Take action now and support Indigenous health equality: National Close the Gap Day; Sign the pledge; More ways to get involved.

Close the Gap 2016
Watch this video shot by Oxfam telling the story of Palm Island's Indigenous community and how the whole island's community works togetherr for better health.
Personal and consumer stories

My life, my choice

Read Sue's story

This is Sue's story as told by ABC digital. Sue is a terminally ill woman who fights for her right to choose how to die, whenever it will be her time.

photo credit: LaNotizia

Communication issues make up the bulk of complaints 

Read full story

This blog tells the story of Patient X from Canada - An 88-year-old man with a week to live who was sent to spend his last days in palliative care, but miscommunication put him back in hospital instead.

We would be better for being their advocates

Read  story in the Guardian

Being awarded a medal of the Order of Australia this year has prompted me to question how I repay a country for improving my life and giving me the opportunity – as a doctor and a writer – to make things better for the next generation.

Empathy: The Human Connection to Patient Care
Empathy: The Human Connection to Patient Care

This video by the US-based Cleveland Clinic vividly illustrates the everyday human drama on any given hospital ward and shows why patient care is more than just healing -- it's building a connection that encompasses mind, body and soul.
News and current affairs

National Day of Women Living with HIV

Read more about the day

This 9 March, the National Network of Women Living with HIV encourage positive women across Australia to hold an awareness event to mark the National Day of Women Living with HIV Australia. It could be a breakfast, a brunch, a morning or afternoon tea, a picnic, lunch or dinner. “Whatever the occasion,” said the group's chair, Kath Leane, “use it to celebrate, advocate, inspire and empower.”

The Femfatales first held this day in 2016. The National Day of Women Living with HIV is purposely placed on the calendar to coincide with International Women’s Day on 8 March.

photo credit: Chip Griffin

The importance of peer support in a caring role

Read full Northside article

Peer support is not about giving lessons to others; it is about sharing experiences and learning from each other in a comfortable and informal environment.

Peer support is an important form of social support that focuses on individuals providing first-hand knowledge and wisdom to each other from their own practical experiences.

Everyday, more than 5000 people are starting their first day in a caring role for a loved one. Coming together with individuals with similar experiences can allow for a wealth of information to be exchanged through collective wisdom and experiences.

photo credit: Aaaarrrrgggghhhh!

How we talk about cancer

Read Darren Saunders' article
Read Erica Ruck's article

Darren Saunders is a cancer biologist who automatically adopted the 'battle' lingo that is usually associated with talking about cancer in his daily professional life. "But I never really gave much thought to the casual, cliched language I had adopted — until a friend pointed out how upsetting and confronting she found it."

Erica Ruck is living with pancreatic cancer. "I object strongly to some of the language used around cancer, and the constant references to war terminology. Not everyone wants to 'fight' and that is ok. I can’t stand that the press regularly refers to people "losing their battle with cancer". If I fell off a cliff, would you say I lost my battle with gravity?", she says.

Download the Cancer Institute NSW's writing about cancer guidelines.



Sobering health stats in latest Productivity Commission report

Read full The Conversation article

The blandly titled Report on Government Services 2017, released by the Productivity Commission in February,  reveals some problems, notably in the areas of out-of-pocket health expenses, potentially avoidable early deaths, Indigenous health and state-by-state differences in health outcomes.

Australians pay more out-of-pocket for health care than many countries, resulting in access problems for a substantial minority. 

Standardised rates for potentially avoidable early deaths have been unchanged for the past few years.

In table after table in the report, we see the stark differences in the outcomes for Indigenous compared to non-Indigenous Australians and there are substantial differences between States.

photo credit: micagoto

Should the government tax unhealthy foods and subsidise nutritious ones?

Read full The Conversation article

In this article  - Senior Research Fellow, University of Melbourne ,  - Senior health economist, Cancer Council NSW and  - Professor of Epidemiology, University of Melbourne argue that the government could substantially improve the health of Australians and potentially free up billions in health care spending if they were to combine taxes and subsidies on a range of 'unhealthy' foods and beverages.

Their recent study says that by tweaking the prices of foods and drinks, to make healthy options more affordable relative to the less healthy products, we can influence what people will buy.

What do you think? Should there be a tax on 'unhealthy' food and beverages to make healthy options more affordable? Let us know on our Facebook page!

Why people with intellectual disabilities are dying avoidable deaths

Read full SMH article

The tragedy around Michelle McIlquham's death following a visit to a NSW hospital wich dismissed here have been widely published this February.

Michelle died of meningitis on May 19, 2009, after a middle ear infection spread to her brain. The 28-year-old's condition was overlooked by medical staff who couldn't see past her mild intellectual disability, a coronial inquest later found.

A landmark study from the University of New South Wales has just been released and it shows that disability discrimination is deadly. Australians with intellectual disabilities are significantly more likely to have their lives cut short. A flawed classification system too often attributes the cause of death to their disability, whether they die of pneumonia or an ear infection.

People with intellectual disabilities were twice as likely to die a potentially avoidable death than the general public.

There is a public petition run by the NSW Council for Intellectual Disability. You can sign it for a call to the NSW government to address the issue.

Have your say

CONSUMER REP OPPORTUNITY

The Macquarie University Health Sciences Centre (MUHSC) is looking for two to three health consumer representatives to join their Consumer Advisory Committee (CAC). The committee advises to the Board of Macquarie University Clinical Associates and works to directly and indirectly increase consumer, carer and community participation and patient centredness in all appropriate facets of MUHSC’s operations.

Health consumer representatives should have links to community and/or consumer groups and the ability to bring knowledge of the opinions and policies of these groups to the committee. They should also have the capacity to reflect views of health care consumers and the community, the ability to work constructively as part of a team and experience serving on a committee or board is preferred.

If you would like to know more or would like to apply for the role, please contact Carla Kelly, Service Quality and Improvement Manager on (02) 9812 2986 or carla.kelly@mqhealth.org.au.
Help choose the theme for Patient Solidarity Day 2017

In 2016, the International Alliance of Patient Organizations' (IAPO's) members were given a choice of four themes for Patient Solidarity Day (PSD) and they voted on patient-centred universal health coverage as their preferred topic.

This year, PSD will fall on Saturday 2 December 2017 and IAPO are asking for everyone within IAPO’s network (both members and non-members) to send them suggested topics for the Patient Solidarity Day 2017 theme. IAPO members will then have the opportunity to vote on the final theme.

The deadline for submitting theme suggestions is: Friday 10 March 2017.
Share your experience with urogynaecological mesh

To attend or phone into the consultation please register here.

To improve the safety and quality of the use of urogynaecological mesh, the Australian Commission on Safety and Quality in Health Care (the Commission) is looking into current practice, women’s experience with the implant and removal of the implant, and the types of complications women may have experienced.

The aim is to develop a range of resources to provide guidance and guidelines for healthcare professionals and patients.

We are helping the Commission with their community consultations. Advice from women who have experience of mesh surgery is important.

Date: Tuesday, 14 March 2017
Time: 10am - 12noon
Venue: Sydney Mechanics' School of Arts; Level 3 Boardroom, 280 Pitt St, Sydney NSW 2000 (nearest train station is either Town Hall or Museum, depending on which line you are travelling)

Interested? You can participate in person or via teleconference. Please register here or call us on (02) 9986 1082 or email info@hcnsw.org.au.

Participants will be remunerated for their time. While registering, please let us know if you need assistance with travel costs. For those of you attending in person, light refreshments will be provided at the end of the session.​
Resources and events
RESOURCES

NEW: Involving health consumers in health and medical research

Download HCNSW report

We have released a new report - Involving Health Consumers in Health and Medical Research: Enablers and Challenges from a Consumer Perspective.

Late last year, we held a joint workshop with 13 health consumers, researchers and representatives, in conjunction with Janelle Bowden from Research4Me.

We have now released a comprehensive report about involving health consumers in health and medical research. A must read for researchers and health consumers alike.

Our South Australian colleagues from the Health Consumers Alliance of SA have also recently released a report on the same topic: Integrating consumer engagement in health and medical research – an Australian framework.

Private health insurance checker

Our friends at the national Consumers Health Forum (CHF)  have developed a handy private health insurance checker. With private health insurance prices set to rise yet again, it's time to check to see if you have a 'healthy' cover.

They have put together a checklist and survey to help people review their private health cover, and switch to a better policy. Everyone with private health insurance should take the time to review their coverage before the April price rises hit.

Translated health resources

Are you on the lookout for translated health resources? The Centre for Culture, Ethnicity and Health (CEH) has an online directory with thousands of translated resources in many Australian community languages. Resources are ordered by language and easy to find.

Do you have a translated resource? Think about adding it to the directory.

'Strengthening Healthcare in the Community’ Guide

The Agency for Clinical Innovation has developed a 'Strengthening Healthcare in the Community’ Guide which is currently being trialled. Watch the video to find out more and apply to become a trial site and try it out for yourselves.

EVENTS
Secure your spot now for our next Graduate Certificate in Consumer and Community Engagement course  

Photo credit: Peter Durand

Our Graduate Certificate in Consumer and Community Engagement course is tailored for the NSW health provision space and run in partnership with the Health Issues Centre in Victoria.

When: This year's accredited program will run over four days on 18-19 May (Thursday-Friday) and 1-2 June  (Thursday-Friday); Every day will run from 9.30am - 4.30pm.

Where: Sydney Mechanics' School of Arts building, Level One, 280 Pitt St, Sydney 

Register your interest or participation now!

What we want from research: guidelines and principles workshop

Following our last workshop and release of our health consumer research report, we are planning a follow-up workshop to produce guidelines and principles for health consumer involvement in research. Keep your diaries open for: 

When: 9:30 to 12:30, Friday 30 March

Where: Carmichael/ Dowling Rooms, Level 1/280 Pitt St, Sydney 

The workshop will be followed by a light lunch.

We will shortly email more details and a registration link to our members and The Wrap subscribers. 

Patient Experience Symposium program

We are pleased to announce the program for the 2017 Patient Experience Symposium is now online.

This year, the organising committe (which we are part of) received quality abstracts from clinicians, managers and consumers across health; allowing us to produce a high standard program of plenary session talks, workshops and keynote speaker sessions. This year's theme is ‘Communication and connecting people’.

You can follow along on social media through the #PExS2017 hash tag in the lead up and during the event. 

Register here

Sydney ideas health forums - Big sugar: The new health threat? 

Sugar is the currently making headlines around the world, but how do we know what to believe?

Excessive consumption of sugar is a major contributor to the increasing rates of obesity around the world, with the majority of Australians exceeding the recommended daily sugar-intake. Is sugar to blame for this? Should we ditch sugar from our diets completely? 

In this Sydney Ideas Health Forum some of University of Sydney's foremost researchers will address these questions.

When: 15 March, 6.00pm - 7.30pm
Where: Charles Perkins Centre Auditorium; John Hopkins Drive; The University of Sydney
Cost: Free and open to all with registration requested. Register online now.
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 - info@hcnsw.org.au 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. 

You can book us for customised training!




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 info@hcnsw.org.au to make a booking or enquiry.
Research and academics
Choosing Wisely Australia National Meeting 2017: Call for abstracts

Choosing Wisely Australia is inviting the submission of abstracts and topics for discussion for its National Meeting on Thursday, 4 May 2017, in Melbourne.

They invite submissions from consumers, consumer representatives, health professionals, member organisations, medical students, registrars, and healthcare leaders which highlight learnings in using the Choosing Wisely approach to support and implement improvements in the safety and quality of healthcare.

You can submit an abstract or topic here.
 
26th NSW Stem Cell Network Workshop: Stem Cells and Gene Editing

The workshop, on 29 March in Sydney, aims to provide an opportunity for Australian researchers, industry representatives and clinicians to meet and share the latest findings on stem cells and gene editing research. The NSW Stem Cell Network welcomes scientists at all levels and particularly encourages students and postdocs to present their work.

There will be a number of selected poster presentations on the day.

To be considered for a poster position in the program please submit your talk title to Tamara Treleaven by Wednesday 22 March via email: t.treleaven@stemcellnetwork.org.au.
 
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