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March 2017

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Depression: Let's Talk
World Health Day 2017 - World Health Organization

Celebrated on 7 April every year to mark the anniversary of the founding of the World Health Organization (WHO), World Health Day this year is all about the importance of talking about depression as a vital component of recovery.

The stigma surrounding mental illness, including depression, remains a barrier to people seeking help throughout the world.

In Australia, it's estimated that 45 per cent of people will experience a mental health condition in their lifetime. In any one year, around 1 million Australian adults have depression, and over 2 million have anxiety (source: beyond blue).

Talking about depression, whether with a family member, friend or medical professional; in larger groups, for example in schools, the workplace and social settings; or in the public domain, in the news media, blogs or social media, helps break down this stigma, ultimately leading to more people seeking help.

So #LetsTalk

Personal and consumer stories

Shared decisions? No, thank you. 

Read Dariusz' blog

Dariusz Galasiński is a patient who has heard enough about shared responsibility. 

"Surely, if responsibility is shared, doctors should take my ‘narrative evidence’ much more seriously than simply letting me speak for 7 minutes only to ignore it completely after I’m done."

Parenting a child in hospital

Read Christin's blog

Christin Lind is a mother of a child with multiple, chronic conditions and has learned how to navigate the hospital environment. This are her tips: 

"I write things down; I look things up; I consult my on-line patient community; I ask better questions; I am better at summarizing my concerns; I am better at communicating what’s important to my son and to our family; I have better self-care coping skills that let me stay more present for what’s happening..."

I'll Think About it Tomorrow
I'll think about it tomorrow

In this video, produced by our friends at the Victorian Health Issues Centre, health consumers talk about personal experiences that made them think about advance health care directives. Do you want to put the burden of decision-making on your loved-ones? How fast can a life change? ...
News and current affairs

March is Endometriosis Awareness Month

March is Endometriosis Awareness Month. Endometriosis is a common disease in which the tissue that is similar to the lining of the womb grows outside it in other parts of the body. 10 per cent of women suffer with endometriosis at some point in their life.

As part of the week, Sylvia Freedman, from our member organisation EndoActive, has written a great article published in The Guardian. She talks about the fact that the idea that endometriosis is a form of mental illness or is somehow caused by poor mental health is one that persists among doctors, as a new study finds. "We cannot expect that in a 10-minute consultation, GPs will be able to provide the emotional support and sensitivity that patients require. But surely they could provide the patient with a list of resources and reassure them that their pain is real?" she says.

Read the Guardian article
EndoActive
Endometriosis Australia 

Australian-first campaign to increase LGBTIQ cervical screening

Read full Cancer Institute NSW article

An Australian-first campaign is aiming to reduce barriers for lesbian, bisexual and queer (LBQ) women and trans, gender diverse and non-binary people screening for cervical cancer.

Cancer Institute NSW and ACON's #AtYourCervix campaign will work with communities in NSW to build awareness, reduce stigma and increase support for cervical cancer prevention.

Cervical screening rates among LBQ women are below the state average in NSW, with misinformation and social barriers believed to be deterring many people from engaging.

Doctors and pain patients often disagree on goals

Read full Pain News Network article

If you’ve ever felt that you and your doctor are not on the same page when it comes to treating your chronic pain, you’re not alone.

A small study published in The Clinical Journal of Pain found that disagreements between primary care physicians and patients over priorities in pain management are common.

Patients generally hope to reduce pain intensity and identify the pain’s cause, while physicians aim to improve physical function and reduce the side effects of opioid pain medication, such as dependency.

photo credit: Ben Hosking

Here’s how much it would cost the government to pay everyone who takes care of family with mental illness

Read full The Conversation article

Primary carers for people with mental illness in Australia do so for an average 36 hours per week – yet this work is not officially acknowledged and largely goes unpaid.

A report by Mind Australia and the University of Queensland recently published found that, in 2015, informal mental health carers provided 208 million hours of care nationally. This was equivalent to the direct support work time of nearly 180,000 full-time mental health workers per year.

Were this care not provided informally, the report found national and state governments would need to fork out an estimated A$13.2 billion to provide the same level of support in the mental health service sector.


Why do staff find it hard to act on patient feedback?

Read full Patient Opinion UK article

A simple search of providers on Patient Opinion - an independent website about patient experiences of health services, good or bad - shows that there's no automatic connection between the amount of feedback and the amount of (visible) change.

recent paper by Laura Sheard, Claire Marsh and colleagues at Bradford Institute of Health Research in the UK, based on observing 17 ward-based staff teams, helps to explain why.

Over a period of six months, staff worked with feedback from patients about safety issues on their wards. Some teams were able to use the feedback to initiate changes, while other teams did not use it, or tried to make changes but failed.

The authors developed a model (the "patient feedback response framework", see picture above) to describe what was needed for change to occur.

Have your say

CONSUMER REP OPPORTUNITY

Do you want to be involved in discussions about food delivery in NSW hospitals? HealthShare NSW, a statewide organisation that provides shared services to support the delivery of patient care within the NSW Health system, is putting together working groups to develop a patient food survey that meets the needs of all parties.

Working groups will consist of dieticians, speech pathologists, nursing staff, hospital managers, HealthShare representatives and external organisations such as the Agency of Clinical Innovation (ACI) as well as health consumer representatives.

Consumer representatives should have an interest in food services and have experienced meal service in either a general adult ward in a public NSW hospital or in a public NSW aged care facility or multi-purpose site (MPS).

Working Groups will meet on 5 April (adult ward) and 10 April (Aged Care or MPS). Workshops will be located in Sydney (Parramatta or Chatswood) but teleconference is available.

If you would like to know more or would like to apply for the role, please contact Carmen Denton, Project Manager on (02) 96853118 or 0476 821 609 or carmen.denton@health.nsw.gov.au.
Closed Facebook group: Consumers in Research

Following our two health consumers in research workshops, we have set up a closed Facebook group for consumers interested in patient and public involvement (PPI) in research and research proposals.

We hope consumers will use the group to get in touch with each other and us to discuss topics and share information. The group initially will be run by us and moderated. 

If you would like to know more, or think we should use a different digital platform for a digital discussion group like this, please contact us on info@hcnsw.org.au

Cancer Council palliative care call-in
 
When a loved one is diagnosed with an advanced or terminal illness they deserve the best possible palliative care. But, right now, that’s not always possible because there's a shortage of specialist palliative care in NSW.
 
So, this April, Cancer Council NSW is asking people with cancer and their carers and families to call the 13 11 20 Information and Support Service and share their experiences with advanced or terminal cancer.
 
The information shared will help paint a picture of the difference that palliative care makes and identify gaps in access to care. It will also help strengthen the information and support services that Cancer Council provides to people with advanced or terminal cancer.
 
Are you living with an advanced or terminal cancer? Do you have a loved one who has experienced advanced or terminal cancer, or accessed palliative care, in the last 5 years? If so, please call 13 11 20 from 9am-5pm Monday to Friday (8am-6pm on Thursdays) during April.  
 
All calls are confidential and will be answered by a qualified health professional.
 
If you’re unable to call you can also share your experience at cancercouncil.com.au/palliativecare.

South Eastern Sydney Local Health District is recruiting for a Community Partnership Officer

The incumbent is responsible for operationalising the SESLHD Community Partnerships Strategy, specifically related to but not limited to, community engagement and community partnership initiatives. This incumbent will also support the SESLHD Equity Strategy as it relates to strengthening community engagement and community lead initiatives.

More information
Western Sydney Integrated Healthcare Forum

The Western Sydney Local Health District is looking for local health consumers to attend an integrated healthcare forum on 5 April in Rosehill Gardens in Sydney. The all-day forum is designed to harness prioritisation and decision-making (through live polling) around significant issues and solution-focussed strategies.

It will focus on how Western Sydney Local Health District can improve healthcare integration to benefit, firstly, patients and the community, as well as clinicians across different settings. International speakers will be speaking on what integrated healthcare looks like overseas. Everyone will have the opportunity to take part in group workshops to brainstorm new ideas.

Register now for the forum
Western Sydney Local Health District health consumer opportunities

Patients and carers sharing their stories of experiencing health care is a powerful tool and it influences health outcomes.

Western Sydney Local Health District is seeking people from their diverse community who would be happy to share their stories with them and the Western Sydney Local Health District of accessing or receiving health care. 

They are also planning to video people's experiences and insights into accessing health services in Western Sydney as a patient or carer and are looking for a videographer.

If you're interested in any of the above opportunities, please contact Community and Consumer Partnership Officer Tara Lee on (02) 8838 6277 or 0437 874 244 or express your interest here.
 
Resources

Australia’s untold health story: Lynch syndrome

Download Lynch syndrome report - produced by health consumers

A new health report from consumers reveals over 80,000 Australians, at increased risk of developing one or more often-aggressive primary cancers in their lifetime, don’t actually know that they’re at risk from a hereditary cancer gene.

Lynch Syndrome Australia has released Lynch syndrome: Australia’s untold health story, a report that calls for a number of important recommendations to improve diagnosis, risk management and support. It draws on the findings of a world-first study of the lived experience of people with Lynch syndrome and outlines responses from the 251 Australian participants.

The findings reveal many Australians with this condition are misdiagnosed, misunderstood and are missing out on essential and appropriate care and support.

Carer Gateway - new website

Carer Gateway website

Are you a carer? Need help finding the right advice, services and support? Carer Gateway is a national online and phone service that provides practical information and resources to support carers. The interactive service finder helps carers connect to local support services.

Delirium Awareness Video (#icanpreventdelirium) | CreativeConnection
Delirium awareness video

Delirium in older adults often goes unrecognised and can be poorly managed. This video aims to improve recognition and management of delirium. Use this tool as a resource for information or training about delirium, whether you are a health care professional, a family member or a caregiver for someone at risk of delirium.

Remuneration and reimbursement of health consumers

Our position statement about remuneration and reimbursement of health consumers, who tirelessly volunteer their time and expertise to ensure the view of health consumers is considered, is now online. 

We recommend that consumers should be remunerated for their contribution and reimbursed for expenses. At the very least, consumers should not be out of pocket for their involvement

International public participation models 1969 – 2016

Sally Hussey from Bang the Table has put together a resource list of International public participation models 1969 – 2016. The article provides an essential resource of 54 models to better map public participation in practice and theory.
 

Events

It’s inevitable we are all going to die. Join the Conversation.

CareSearch, a palliative care website, are developing and running a ‘Massive Open Online Course’ (MOOC) on death and dying (Dying2Learn) for the second year in a row.

MOOCs are short web-based courses. They are free and anyone with a computer can access them. The CareSearch MOOC will provide an opportunity for any Australian to openly and supportively discuss, learn, and contribute to discussions on social issues around death and dying. The MOOC has been created for the general public in Australia, but everyone is invited to join us.

The MOOC is scheduled for release 3 April. Registrations are open now. It will run for five weeks.

If you would like to find out more about this MOOC, or if you would like to register your interest please visit www.caresearch.com.au/Dying2Learn.

Webinar: Practical Steps and Changes for Patient Centred Care 

The Australian Improvement Foundation (if) presents international improvement science leader and distinguished Professor, Dr. John Øvretveit, for a live webinar to discuss using care coordination improvements and patient-reported outcome measures for everyday services.

Date: Tuesday 4 April, 2017
Time: 12:30 PM - 1:15 PM

Please register here for ' qiCommunity Webinar - John Ovretveit - Practical Steps and Changes for Patient Centred Care'.

Shared Decision Making Masterclass

Registrations are open for the ACI's Shared Decision Making Masterclass: Making health decisions together with Professor Tammy Hoffmann and Professor Lyndal Trevena.

When: Friday, 26 May 2017; 9.30am to 4pm
Where: Kirribilli Club, 11 Harbourview Crescent, Lavender Bay NSW 2060

The aim for participants is to understand what shared decision making is, the main steps involved and to develop skills in using it in clinical practice.

Places are limited and people can register online today.

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!

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.
Become a HCNSW member - it's free to join!
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