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January 2017

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#WeCanICan - World Cancer Day 4 Feb

4 February is World Cancer Day, a truly global event taking place every year that unites the world’s population in the fight against cancer.

It aims to save millions of preventable deaths each year by raising awareness and education about the disease, pressing governments and individuals across the world to take action. 

Under the banner ‘We can. I can.’ the day will encourage people to be more active - in every sense - in the fight against a disease that, in less than two decades, will directly affect up to 21.7 million people per year.

To help spread this message, World Cancer Day is harnessing the power of sport by encouraging sports fans, organisations and personalities to use their voice and reach through the ‘Support through Sport’ initiative.

To get involved visit World Cancer Day's website and tweet, post and hashtag away...

Personal and consumer stories
Jenny's story: Mental illness - my lived experience

Read blog

"My name is Jenny. I would like to share my own journey and my families experience of mental illness with you."

This is how Jenny contacted us via facebook. Thank you so much for being brave enough to share your experience with all of us Jenny. We really appreciate it. This is her story. 

Sol’s second chance

Read full story

Land Rights legend Sol Bellear considers himself one of the lucky ones.

A decision he made some nine months ago to lead a healthier lifestyle not only saved his life but made him more determined to lead the campaign for men’s health.

A few months before he was to die from a massive heart attack, Sol decided to change his life.

Living with NETs

Kristen Leknius shares some of her experiences as a person living with NETs (Neuroendocrine cancers), and some of the things she has learned along the way. See her speech as a consumer rep for our member organisation The Unicorn Foundation.
News and current affairs
NSW Health Minister Jillian Skinner announces retirement from politics
Brad Hazzard new Minister for Health

New South Wales Health Minister Jillian Skinner has announced she will retire after more than two decades in state politics.

The veteran MP was under intense scrutiny last year over her handling of several scandals in the health system and there was wide speculation she would be dumped when new NSW Premier Gladys Berejiklian announced her new frontbench. Read full ABC article

Bradley Hazzard MP. member for Wakehurst, will become new Minister for Health, and Minister for Medical Research.

Mrs. Skinner was a great supporter of Health Consumers NSW. We thank her for her support and for being open to discussion on areas of disagreement. HCNSW looks forward to working with the next NSW Health Minister on continuing to improve consumer engagement and strengthening consumer centred care in NSW.

Greg Hunt new federal Minister for Health

The Hon.Greg Hunt MP was announced to the position of Australian Minister for Health in mid-January.

“The Health portfolio is currently in the midst of a wide range of changes and reforms, and we look forward to engaging with the new Minister to progress these important issues”, the Consumer Health Forum’s chief executive officer, Leanne Wells said. 

Read full CHF press release

image credit: Interaction Institute for Social Change | Artist: Angus Maguire/madewithangus.comCC BY

The importance of teaching doctors and nurses about unconscious bias

Read full The Conversation article

For thirty years, Australian institutions have implemented cultural awareness programs. The thinking was if they taught staff about Aboriginal and Torres Strait Islander cultures, it would result in better lecturers, clinicians and policy-makers – and magically produce equity.

But this assumes Aboriginal culture is the problem. Like a deaf student in an all-hearing classroom, it is not the deaf student or their needs that are the problem, but a system that thinks an all-verbal and all-hearing teaching style is equal. The idea of equality itself entrenches systemic discrimination.

photo credit: John Mutford

‘It’s your fault you got cancer’: the blame game that doesn’t help anyone

Read full The Conversation article

Culturally, we have very clear ideas about cancer: what someone with cancer looks like, how it must feel, and even what it says about those who get diagnosed.

Social assumptions have important implications for people living with cancer. And while “taking ownership” in response to having cancer can be useful for some, it can lead others to question what they may have done wrong to get it.

photo credit: Tuan Hoang Nguyen

'Weird' idea is transforming the care of dementia patients

Read full The Age article

Three years ago when Jay Newton-Small moved her father into a care facility she was given a 20-page questionnaire to fill out. Her father had Alzheimer's disease and his fading memory and agitated behaviour made it hard for caregivers to understand his needs.

"I was like, 'You're never going to have time to read 20 pages on each patient," said Jay, a Washington resident who was a reporter for Time magazine. So, at the risk of the staff thinking she was "weird," she offered to use her professional skills to write her father's story for them.Today, Jay's organisation, MemoryWell, has provided profiles of a dozen people at three facilities and is piloting with five more organisations.

MemoryWell

photo credit: shutterstock

Treating generational stress: are probiotics the answer?

Read full UNSW article

For the first time, Australian researchers have found a link between a father's stress levels and learning and memory ability in his offspring and that these negative effects can be reversed by probiotics.

The researchers say the discovery in rats opens the way for research into the clinical effectiveness of probiotics for the treatment of stress-related emotional health problems in children.

The UNSW research, published in the journal Psychological Science, revealed two novel findings related to the emergence and treatment of the generational effects of stress.

Australians encouraged to ask the right healthcare questions

Not everyone has the confidence to ask the right questions of their doctors, but Choosing Wisely Australia® is encouraging Australians to do just that to avoid unnecessary medical tests and treatments.

They recommend people ask their doctors the following ‘5 Questions’ before they have any test, treatment or procedure:
  • Do I really need this test or procedure?
  • What are the risks?
  • Are there simpler, safer options?
  • What happens if I don’t do anything?
  • What are the costs?
The ‘5 Questions’ resource is available in 10 languages at choosingwisely.org.au. There are also tips on how to plan for your next healthcare appointment.
 
Have your say
Public consultation on revised Code of conduct for nurses and midwives in Australia

photo credit: Walt Stoneburner

The Nursing and Midwifery Board of Australia (NMBA) is currently reviewing the Code of conduct for nurses in Australia and Code of conduct for midwives in Australia. They set out the legal requirements, professional behaviour and conduct expectations for all nurses and midwives, in all practice settings, in Australia.

The NMBA values your input for the review of the codes. You can participate by completing the online survey from 23 January 2017 to 10 March 2017.

The NMBA has published a comprehensive web page and video that provides background information on the revised codes, an explanation on the development of the revised codes and the key features.

What matters most for your oral health?

ICHOM (www.ichom.org) is an international non-profit organisation that unites doctors, dentists, nurses, policymakers and patients to improve health care worldwide.

They want to know: what are the results of healthcare that are most important to people affected by common dental conditions like gum disease or cavities?

ICHOM is inviting patients to support their oral health project through participation in one or more patient engagement activities:

  • focus group member
  • ICHOM patient representative
  • validation survey participant
If you are interested in being part of this initiative, please contact Elizabeth Olson (e.olson@ichom.org), ICHOM Standardization Associate or Stacie Myers (s.myers@ichom.org), ICHOM Project Leader.
photo credit: WHEATON

Provide feedback on NSW Policy for biobanking

The NSW Office for Health and Medical Research (OHMR) has previously released a draft Policy Directive on Consent for Research Biobanking (draft Policy Directive) that outlines requirements for participant consent when collecting human tissue for storage prior to use in research (i.e. biobanking) in NSW Health facilities.

The OHMR has released a new draft for public consultation prior to finalisation. They are seeking feedback from biobanks, researchers, clinicians, ethicists, participants and other stakeholders affected by the policy prior to finalising.

Submissions close on Monday, 20 February 2017. 

Please check this web page and email any replies to:biobankconsent@doh.health.nsw.gov.au. For further information, or to provide preliminary feedback, please contact Brett Reed, Principal Policy Officer at brett.reed@moh.health.nsw.gov.au or on (02) 9391 9362.

CONSUMER REP OPPORTUNITY

St Joseph's Hospital in Auburn is looking for a consumer rep to join their team

The consumer representative will play a key role in providing information from a consumer perspective, whilst supporting the service provided by the unit staff. The role may entail a diverse range of activities including but not limited to: indirect patient care greeting patients, relatives and carers, actively participating in relevant departmental or committee meetings, obtaining feedback from patients on a specific ward, and/or reviewing patient information or policy(s) specific to a clinical area.

Please download the position description and if you are interested contact Michael Kelly, Deputy Director of Nursing on (02) 974 90250 or soton38@gmail.com.

Please apply directly to the contact listed. We are not managing the process, simply advertising through our networks.

What do you think about The Wrap?

Please let us know how we can improve this e-newsletter and our website! Take the short surveys below

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Resources and events
RESOURCES

Clinical Trials in Australia and community involvement

This upcoming twitter chat, organised by Janelle Bowden from Research4Me, is a great way to connect with a community of people with similar interests around Australian clinical trials.

Or rewatch the first chat here.

How to speak up for yourself

Learn how to speak up for yourself and others by watching this TED talk by Adam Galinsky.

Speaking up is hard to do, even when you know you should. Learn how to assert yourself, navigate tricky social situations and expand your personal power.

EVENTS
HCNSW consumer representative training program 

Our two-day health consumer representative training program is fully catered and delivered from our office venue at the Sydney Mechanics' School of Arts building, Level One, 280 Pitt St, Sydney 2000.  

Register now for our 2017 consumer rep trainings!

Our 2017 training dates for consumer representative are:
  • Thursdays 16 and 23 February
  • Saturdays 20 and 27 May
  • Tuesdays 22 and 29 August
  • Mondays 13 and 20 November
The program introduces the concepts and practises of consumer engagement in the NSW health system and is facilitated by two experienced leaders. The target group is health consumer representatives engaged with Local Health Districts, Primary Health Networks, or Public or Private Hospitals and health-related NGOs.

If you are interested in learning more about what we cover in our training for consumers and staff, please call Karen Filocamo on 0400 055 110 for more information, or visit our Training page to book.
The Agency for Clinical Innovation, Clinical Excellence Commission, Health Education and Training Institute, Bureau of Health Information, Cancer Institute NSW, eHealth, Mental Health Branch and Health and Social Policy Branch at the Ministry of Health and Health Consumers NSW are pleased to announce the 2017 NSW Patient Experience Symposium to be held at the Masonic Centre, Sydney, from the 2 – 3 May 2017. 

The Symposium Committee encourages health consumers partnering with NSW Health services and agencies to attend the Symposium free of charge. NSW Health consumers should contact their affiliated organisation to express interest in attending.

If you are a consumer not associated with a NSW Health organisation and you are interested in attending the Symposium, please contact the conference organiser: info@alignmentevents.com.au
 
For more information visit here. Registrations are now open. Registration rates are $140 per person for the two-day event, single day registrations are not available. The program will be launched in mid-February.
 
14th National Rural Health Conference in April 2017

The 14th National Rural Health Conference is shaping up to be another unique and inspiring event with more than 500 people submitting an abstract for a potential spot on the program.

When: 26 - 29 April 2017
Where: Cairns

The program is now available for download and registrations are open.

Upcoming Webinar: ‘Chronic pain – Does sex have to stop?’

Is chronic pain interfering with your sex life?

Learn about the effects of chronic pain on your sex life, and develop strategies to combat these changes at Arthritis & Osteoporosis NSW February webinar. 

When: 23 February 2017, 6pm to 7pm
Cost: $15 for Members / $25 for non-Members
Register: Call Arthritis & Osteoporosis NSW on 02 9857 3300 or register online. Registrations close 21 February 2017.

For more information visit here.

Rural Innovations Changing Healthcare (RICH) Forum

When: 31 March 2017, 9am to 3.30pm (est), join for a session or stay for the day

Showcase your project.
Share your lessons learned.
Think about submitting an abstract!


This statewide Forum, organised by the NSW Agency of Clinical Innovation (ACI) is ‘virtual’ in design, linking 19 satellite hubs via a blend of video conferencing, live web streaming and social media for a day showcasing innovative rural models of care which have the potential for broader implementation. The aim is to share lessons learned and increase collaboration across rural health sectors. Registration is free of charge.

Abstracts open on 17 January and close 27th February 2017. Click here to learn more or contact Jenny Preece, ACI Rural Health Network Manager at Jenny.Preece@health.nsw.gov.au or 0427 568 429 / 02 6692 7716.
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
Poor Health: The Cost of Living in NSW

The NSW Council of Social Service (NCOSS) has just released a report on the high and growing cost of health in NSW. And the impact that this having on people experiencing or at risk of poverty. The report brings together the results of NCOSS’s consultations across NSW with data and research.
 
The report can be downloaded from NCOSS website.
Australia’s patients’ and families’ perspectives on genome sequencing Report and Patient Charter

Genetic Alliance Australia (GA) has released the results of a twelve-month project looking into the perspectives and needs of Australian patients and families who are considering genome sequencing.

This comprehensive report is the first of its kind in Australia and serves as a reference guideline with twenty-one recommendations over six identified themes for relevant stakeholders to consider when incorporating genomics and testing services into the healthcare system. The report also contains two Case Studies and a Patient Charter aimed at providing guidance to those considering having their genome sequenced.

Report and press release
Local clinical trials for vascular dementia

A Multicentre, Randomised, Double-Blind, Placebo-Controlled Trial to Evaluate the Effectiveness and Safety of Sailuotong (SLT), a Standardised Herbal Medicine Formula in Patients with Vascular Dementia and Alzheimer’s Disease with Cerebrovascular Disease.

NSW locations include: Hornsby, Blacktown, Waverley, Bankstown, Liverpool, Bella Vista and Wollongong.

More information
Interventional approaches to health literacy in pharmacy practice and education

Research in Social and Administrative Pharmacy (RSAP) is compiling a special issue to examine the meaning, relevance and impact of health literacy in pharmacy practice.

They are keen to receive papers that examine health literacy from consumer, pharmacist, and broader health system perspectives, as well as papers that examine the organisational enablers and constraints associated with effective communication in pharmacy practice.

Papers should be submitted to RSAP on its electronic platform at http://ees.elsevier.com/rsap. The deadline for submission is 1 September for publication in early 2018.

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