February 2020

Rethinking rural mental health
Endorsing the Orange Declaration

In their last 2019 meeting, our Board endorsed the Orange Declaration on Rural and Remote Mental Health.

Rural mental health outcomes have been persistently poorer than those in larger cities suggesting that current methods and initiatives to improve matters are not working.

Mental health researchers and service providers from across Australia came together in October 2019 to contribute to and endorse the ‘Orange Declaration’ which identifies ten solutions to problems that will improve rural mental health outcomes.

Director of the Centre for Rural and Remote Mental Health (CRRMH) Professor David Perkins said there was good evidence that rural mental health was not improving, and that single, short–term, disjointed investments were unlikely to make a long-term difference.”

“We need to think about solutions in relation to the problems. What are we doing about prevention and early intervention, how can we involve community members, how can we ensure the use of the best evidence and new approaches to data as well as shared and effective leadership,” said Professor Perkins.

The declaration identifies ten clear solutions to problems, including that co-designed bottom-up processes should be pursued and that whole-of-community approaches are needed. The declaration is the result of collaboration and contribution from a wide group of interested parties with the final declaration being published in The Australian Journal of Rural Health.

Click here to endorse the declaration
Click here to find out more about the declaration
Read the blog from lead-author, Professor David Perkins, about the declaration

StepUp for Dementia

Late last year, we became a StepUp Organisation Champion!

StepUp for Dementia Research is a free, online, postal and telephone service that connects people interested in dementia research with researchers conducting studies into dementia prevention, diagnosis, treatment, care and cure.

Anyone aged 18 and over – both with and without dementia – can register their interest, which can take as little as five minutes. Based on volunteers’ characteristics such as age, location and diagnosis, they will be matched to any studies for which they may be eligible.

Improving quality of life, discovering effective new treatments and the search for a cure all depend on research. But without research participants research cannot take place.

The first step is to register online or by phone/post. That doesn't automatically sign you up for a study.

https://www.stepupfordementiaresearch.org.au
Phone: 1800-7837-123

Now online: IFIC webinar

Watch the webinar here

'Meeting community needs’ is a phrase often heard in health service planning, but how do you know if you are meeting the needs and expectations of the communities you are working with? And are needs analyses, demographic profiles and epidemiological data all that’s needed when it comes to designing and delivering health intervention?

Anthony explored these questions in a webinar with the International Foundation for Integrated Care in December last year.

You can rewatch the webinar here.

Do you want to become a health consumer representative in 2020? Or learn more to become more effective in your health consumer representative and patient advocate work?

We still have some spots left in our February, 2-day training in Sydney's CBD! This is your chance to network with consumer reps from different organisations, learn new skills and develop in your role. Our new program includes workshops, peer learning and facilitated discussions.

27 FEBRUARY & 5 MARCH 2020: THURSDAYS 9:30am – 3:30pm

Enquire now and talk to the organisation where you do your health consumer representative work to sign you up: https://www.hcnsw.org.au/consumer-representative-training-2020/

Personal and consumer stories

Diana Aspinall, champion of health consumers

Read Diana's obituary here

Health consumers everywhere have lost a true champion with the passing of Diana Aspinall, at age 80.

A leading figure in the development of the health consumer movement in the Blue Mountains, Diana was also one of our (Health Consumers NSW’s) founding members. She set a wonderful example over 45 years of the way consumer advocates can make a lasting difference to health and community care.

A former registered nurse, Diana used her own experience as someone living with multiple health conditions to highlight the everyday needs for healthcare in her region and society. Diana worked at local, state and national levels.

A Note From Your Colleagues With Hearing Loss: Just Use a Microphone Already

Read Jessie B, Ramey's complete blogpost

In this blogpost on ChronicleVitae, Jessie B. Ramey explains why to use just use the microphone offered! "It’s not about you." When you were offered the microphone to make your comments, you said, "No thanks, I’m good." But it’s not about how you feel using a microphone. It’s about how others can best hear.

Refusing to use a microphone is like scheduling a meeting in a room accessible only by stairs. And then when your colleague in a wheelchair shows up and asks for a ramp so she can attend, you stand at the top of the steps and say, "No thanks, I’m good."

News and current affairs

Coronavirus has been declared a public health emergency

NSW Health: Official NSW Health information and updates about 2019-nCoV (novel coronavirus)
WHO: World Health Organization - Novel Coronavirus
Global map of spread: Johns Hopkins University - Wuhan Coronavirus (2019-nCoV) Global Cases

As of 10.10am 31 January 2020, there are four confirmed cases for 2019-nCoV (Coronavirus) in NSW and nine cases under investigation. The risk of infection here is considered low.

NSW Health has implemented a range of measures to promptly identify cases of novel coronavirus infection and prevent transmission in NSW.

A range of resources are available for the public and health professional. Two alerts have been sent to general practitioners and emergency departments. Updated alerts will be continued to be distributed as required.

Infection with 2019-nCoV is now notifiable under the NSW Public Health Act 2010, so doctors and pathology laboratories are required to notify NSW Health of all people suspected to have this infection.

The World Health Organisation (WHO) has declared the Wuhan coronavirus outbreak a global emergency. It marks just the sixth time a global pandemic has been given that designation

New fee website shows NSW pays up to 40 times more in out-of-pocket costs

Read complete SMH article
Read complete Australian Healthcare & Hospitals Association news

Private health patients in NSW are paying up to 40 times more in out-of-pocket costs than patients in other states for the same procedure.

While the federal government's new $7.2 million fee transparency website does not name individual specialists or list their fees, it reveals shocking disparities between what patients with private health insurance pay across the country and within Sydney.

In NSW, the average gap between the fee charged by a specialist and the Medicare benefit plus private health insurance benefit for cataract surgery was $650, compared to $30 in Tasmania. For hip replacements, NSW residents paid an average of $1800 to cover the gap between doctor's fees and any rebates, while those in Western Australia paid $170.

There were stark differences in out-of-pocket costs between public health networks within NSW and Sydney as well.

Meanwhile, the Australian Healthcare & Hospitals Association says that official Medicare data released in response to an October 2019 Senate Estimates Question on Notice reveal a shocking truth about out-of-pocket costs to see specialists everywhere in Australia.

"In New South Wales, 28 electorates out of 45 have average costs of over $90 per visit, with eight electorates above the $100 per visit mark."

Photo by Jonathan Borba from Pexels

Have your say

KITCHEN TABLE DISCUSSION HOSTS

Join a research team that studies the evidence-base and implications of informing women about their breast density

Deadline: Friday, 7 February 2020
Who: Health Consumers Queensland & Consumers Health Forum of Australia

The Consumers Health Forum of Australia (CHF), in collaboration with Health Consumers Queensland (HCQ) is offering consumers and carers from across Australia the opportunity to facilitate a consultation with their local community on primary health care, and how we can deliver health care in the community that is accessible, convenient and keeps people well.

HCQ is looking for 12 people to host the Kitchen Table Discussions from across all states and territories. They would like the hosts to have personal experience with, or an interest in, primary health care. They are also interested in representing the views of a range of consumers who may not typically have a say in healthcare. To achieve this, they are particularly looking for hosts who are consumers and/or carers and can demonstrate they have strong links with their communities.

Hosts – you will be remunerated at HCQ’s full-day meeting rate of $374. You will also be reimbursed up to $100 to cover catering and venue costs for your session (on return of receipts).

Participants – HCQ will provide a $60 gift voucher for each Kitchen Table Discussion participant for their time.

Find out more and apply to become a host.

HEALTH CONSUMER REP OPPORTUNITY

Become part of consumer advisory group for Sydney University’s Doctor of Medicine program

Deadline: Monday, 24 February 2020
Who: Sydney Medical School, The University of Sydney

Consumer Engagement Advisory Group
Doctor of Medicine (MD) Curriculum Development

We are pleased to announce that the Sydney Medical School (SMS), University of Sydney, is establishing a Consumer Engagement Advisory Group. The purpose of the Consumer Engagement Advisory Group is to advise on consumer issues for the Doctor of Medicine (MD) Program (what is taught to medical students).

Application for membership of the SMS Consumer Engagement Advisory Group is now open to health consumer representatives living in NSW.

Members of the Consumer Engagement Advisory Group will be reimbursed in line with HCNSW’s recommendations for remuneration and reimbursement of health consumers.

For more information and to submit an Expression of Interest, click here.

HEALTH CONSUMER REP OPPORTUNITY

Applications to join the Alcohol & Other Drugs Consumer Reference Committee extended

Deadline: Friday, 14 February 2020
Who: NSW Ministry of Health, Center for Population Health, Alcohol and Other Drugs Branch

The AOD Consumer Reference Committee (CRC) has vacancies for two (2) new consumer representatives.

WHAT IS THE CRC?

The purpose of the CRC is to create a strong consumer voice which will guide policy development and enhance safety, quality and innovation in NSW AOD services funded by NSW Health. The CRC was established to support and facilitate meaningful engagement between the AOD Branch at the NSW Ministry of Health and consumers with a lived experience of alcohol or drug use.

WHO IS NEEDED?

The CRC is looking for applicants that may:

have a lived experience of alcohol or other drug use.
have a family or significant other who has been impacted by harms associated with alcohol or other drug use.
be a representative of a gender and sexually diverse consumer or community organisation.
be a representative of a youth consumer or community organisation.

Find out more and and apply to become a member of the committee

ENQUIRY

Cancer Australia Lung Cancer Screening enquiry

Deadline: Monday, 17 February 2020
Who: Cancer Australia & Australian Department of Health

Cancer Australia is inviting the public to have their say about the Lung Cancer Screening enquiry through a dedicated Consultation Hub.

The enquiry is being held to investigate the feasibility for a national lung cancer screening program for people at high risk of lung cancer. This will include a review of national and international evidence on the benefits and harms of lung cancer screening, target population groups, and the design and effective delivery of a national lung cancer screening program in the Australian setting.

Early diagnosis of lung cancer is critical to improving outcomes, with more than 50% of lung cancer cases being diagnosed at an advanced stage. Advanced stage at diagnosis is associated with poorer survival. Lung cancer is the leading cause of cancer death in Australia, accounting for nearly 1 in 5 of all cancer deaths.

Cancer Australia will provide a report on the Lung Cancer Screening enquiry to the Minister by October 2020.

Visit the Consultation Hub

ALLIED HEALTHCARE SURVEY - RESEARCH STUDY

Research study on allied health in palliative aged care

Deadline: As soon as possible
Who: End of Life Directions for Aged Care (ELDAC)

End of Life Directions for Aged Care (ELDAC) at Flinders University are running a study looking at the role of allied health professionals providing palliative care for older Australians in residential and community aged care. If you are an allied health professional working in aged care and would like to participate, please click on the relevant web link below to begin. The survey takes about 10-20 minutes to complete.

For more information, please refer to the Participant Information Sheet embedded as a link in the survey or if you have any questions, please contact Dr Kelly Jones on email: kelly.jones@flinders.edu.au

Take the survey

SURVEY - RESEARCH STUDY

Plus Paternal: A focus on fathers

Deadline: Friday, 17 February 2020
Who: Healthy Male

Take the survey

Planning for and having a child are life-changing events and should focus families’ attention on health. Many families are unaware that men’s health and lifestyles can affect their chances of becoming a father and the future health of their children.

But, how well does the health system cater for men’s health needs at this time? And what can be done to improve men’s involvement?

The Healthy Male Plus Paternal: A focus on fathers project is hoping to answer these questions and many more about men’s health needs and experiences on their journeys to fatherhood.

Find out more and take the survey

SURVEY

Living Well for Longer

Take the survey

Living Well for Longer - This national consumer survey is open to all Australians of all ages. The federal government will use results from the Living Well for Longer Survey to assist in the development of the National Preventive Health Strategy.

NATIONAL OPPORTUNTIES

For national opportunities in health consumer representation that are run by the Consumers Health Forum of Australia please visit their Committee vacancies webpage.

Events, workshops and more

World Cancer Day

4 February 2020 is World Cancer Day. The theme is: "Create a future without cancer. The time to act is now."

More information: www.worldcancerday.org

Head & Neck Cancer - Patient, Family & Team Forum

“Living Well Before, During and After Treatment”

When: Friday 12 June 2020; 8.30am-4.30pm
Where: Garvan Institute of Medical Research; 384 Victoria St, Darlinghurst (Sydney)
Who: Hosted by St Vincent’s Hospital Sydney & The Kinghorn Cancer Centre
Information: https://headneckcancerforum.com/

The forum brings together patients, family members, radiation oncologists, medical oncologists, dentists, allied health practitioners, GPs, volunteers, surgeons, nurses, researchers and other interested stakeholders to share examples of the good work being done to improve the lives of people affected by head & neck cancer.

Northern Sydney Expo for people with a disability

Date: Thursday, 21 May 2020, 12-7pm
Venue: The Concourse Chatswood
Contact: Lisa Duffy; lisa@fightingchance.org.au

Stallholders will include service providers for:

SLES (School Leavers Employment Support)
Social and Community Participation
Support Coordination
Plan Management
Disability Employment Services (DES)
Australian Disability Enterprise (ADE)
Education
Apprenticeships and Traineeships
The National Disability Insurance Scheme (NDIS)

More details to come (including how to register as a stall-holder and sponsor).

Rural Innovations Changing Health Care Forum
Virtual Forum - No Registration Fee - No Travel

When: 25 March 2020; 9am – 3.30pm
Where: Videoconference
Who: NSW Agency for Clinical Innovation
Information: www.aci.health.nsw.gov.au/go/rich-forum

This statewide Forum is ‘virtual’ in design, linking rural clinicians and consumers via a blend of videoconference, live webstreaming and social media for a day showcasing strategies which rural communities are implementing to improve mental, physical and social wellbeing whilst achieving quiet, incidental health benefits which quietly creep up on you!

There are no travel, accommodation or registration fees.

Save the date: Huntington’s Disease - National Conference

Date: Friday 13 – Saturday 14 November 2020
Where: The Concourse Chatswood
Contact: www.huntingtonsnsw.org.au

More details coming soon.

Resources

ShishaNoThanks

The ShishaNoThanks campaign has been hugely succesfull. The project raises awareness about the harms of waterpipe (Shisha, Hookah, Argileh) smoking. It has been co-designed with the community to ensure cultural appropriateness and that key messages are relevant and accepted by the wider community.

The project team has developed a range of resources, including the above video, a website, factsheets, social media channels and more.

Visit the website for more information.

A Guide to Build Co‑design Capability

Download the Guide here

A Guide to Build Co‑design Capability - by the NSW Agency for Clinical Innovation. Bringing consumers, clinicians and healthcare managers together...

The Guide is a resource that is designed to support local health districts and specialty health networks partner with people with lived experience of a health condition to make healthcare improvements using co-design processes.

And it - of course - has been co-designed.

Story Matters: Why You Should Embed Patient Stories at the Heart of Healthcare

Read article by Marie Ennis-O'Connor on LinkedIn

"Recent breakthroughs in neuroscience reveal that your brain is in fact hardwired to respond to story. Your brain on story is different from your brain when it is receiving any other form of information, including straight facts and data. While facts and figures engage a small area of the brain, stories engage multiple brain regions that work together to build rich emotional responses."

Living and dying in comfort for diverse populations

Download resources here

No one should be excluded from receiving aged care and palliative care support, yet older people may face barriers in accessing services due to their culture, religion, finances, gender, sexuality and/or location.

ELDAC’s new ‘Diverse Populations‘ webpages provide guidance and resources for health professionals and aged care workers to support palliative care and advance care planning to improve the care of older diverse Australians.

Living and dying in comfort is a basic human right. Dignity. Choice. Respect.

ELDAC is funded by the Australian Government Department of Health and provided by a consortium of university and peak industry bodies.

Q&A Information on Breast Implant-Associated - Anaplastic Large Cell Lymphoma (BIA-ALCL)

This video is for members of the public who may have questions about Breast Implant-Associated - Anaplastic Large Cell Lymphoma (BIA-ALCAL) and seeks to answer some of the question health consumers with breast implants may have about the topic. It has been produced by the Therapeutic Goods Administration.

Academics

IJIC Special Collection Call for Papers

More information on the issue and how to submit papers

The International Journal of Integrated Care (International Foundation for Integrated Care) is putting a special issue together on people-driven care and they are looking for papers on projects and research that reflect this. This special collection will bring together papers that focus on empowering and engaging people and, specifically, on the role and impact of co-production and co-design in integrated care.

There is a high author fee but they run a bursary scheme to reduce author fee costs to authors from low- and middle-income countries as well as from users and carers.

Submission deadline: 31st March 2020
Expected publication launch of special collection: 1st October 2020

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