June 2019

Men's Health Week: Keeping boys and men healthy
10-16 June 2019

International Men's Health Week is celebrated every year around the world in the middle of June. It is an important opportunity to highlight men's health and what it means to be healthy.

Through a series of promotions, events and publicity around the country, Men's Health Week is designed to provoke thought and discussion about what needs to be done to improve male health.

The idea of producing health services that work for men and boys is gaining traction and acceptance around the world.

To learn more, become involved in Men's Health Week or register your event during the week, go to the Australian Men's Health Week website.

Official partnership with Research4Me

We have informally partnered with Janelle and our friends at Research4Me before and have even produced a report on Involving Health Consumers in Health and Medical Research together.

But now it's official, last week Health Consumers NSW signed a Memorandum of Understanding (MOU) with founder and Executive Officer at Research4Me, Janelle Bowden (pictured here). We see the MOU as a way to continue our existing support and collaboration and expand future projects.

We are looking forward to working together to support the involvement of consumers in research.

Places in NSW we love

As you might know, we recently updated our office in Sydney's CBD as our emergency exits needed updating.

To make the new space nice and relevant, we want to hang photographs of different places in NSW on our walls. As we strive to be a voice for all health consumers in NSW, we also think the pictures will remind us of the places that are important for you - our members and NSW health consumers.

So if you took some great photos of places in NSW that are important to you and you would like to see them on our walls, please send your photo of a place in NSW you love to info@hcnsw.org.au with 'place I love' in the subject line. If we choose to display your photo, we will let you know and might ask for a higher resolution picture too.

Photo: by Anthony Brown, Canowindra NSW.

2019 dates: two-day Health Consumer Representative Training in Sydney CBD

Our two-day course in Sydney CBD teaches health consumer representatives and advocates about the roles and responsibilities of health consumers, health service providers, and their interactions.

It also includes information about levels of consumer engagement; effective advocacy and the use of personal experience in it; and lots more!

Another great feature of the CBD course is that consumer reps from lots of different organisations mingle, learn from each other and network.

Health Consumer Representative Training Program (2 days) Aug 2019
Thursdays, 15 August and 22 August 2019

Health Consumer Representative Training Program (2 days) Nov 2019
Tuesdays, 5 November and 12 November 2019

Talk to the organisation where you represent health consumers now about attending our August or November training!

Book our one-day or two-day health consumer representative courses to run at your health service
Train-up your health consumer representatives!

Research shows, that fully engaged health consumer reps have the greatest impact, involvement and satisfaction in their role. Our training ensures that your consumers are confident and capable; working together with you for the benefit of all health consumers in NSW.

Choose from our one-day Introductory Consumer Representative Training or two-day Consumer Representative Development Training. We come to your place and train your consumers.

Find out more:
hcnsw.org.au/training
ecollins@hcnsw.org.au
02 9986 1082

Personal and consumer stories

Just Invisible

Read full interview with Ricky by Every Australian Counts

Last year Ricky Buchanan published a fantastic report called “Just Invisible” Medical Access Issues For Homebound/Bedridden Persons. The report looked at the challenges people who are homebound or bedridden face when trying to access health care and disability support schemes. Every Australian Counts had a chat with Ricky. This is the interview where she talks about the problems for homebound/bedridden persons to access care and solutions on how to do better.

Kindness matters

Read full blog by Debra Letica on BridgeBuilders

Sharing one’s lived experience takes courage – this is Debra Letica's story. The WA-based carer/consumer representative on why kindness matters.

"I believe that kindness is the key to enabling conversations about what matters to you. Kindness builds teams which then increases patient safety. It breaks down barriers and changes mindsets."

News and current affairs

Consumer representative involvement in health service organisation accreditation

Read full article by Tony Lawson in Health Voices (CHF)

This article by Tony Lawson in the Consumer Health Forum's magazine Health Voices is a good summary of the development of health consumer involvement in health service accreditation.

"In recent years consumer representation has flowered in various areas of health care, including in the accreditation of health service organisations. Hospital adverse events are now more likely to prompt calls for greater consumer involvement in safety and quality systems, a trend supported by national standards introduced this year strengthening the consumer role.

Before 2013 the involvement of patients as advisers for improving and monitoring quality and safety at the clinical level in health service organisations (HSOs) in Australia was rudimentary and not systemic. In 2013, Australia adopted the National Safety and Quality Health Service (NSQHS) standards, developed by the Australian Commission on Safety and Quality in Health Care (ACSQHC) through a widespread national consultation across key groups (Braithwaite et al. 2018, Greenfield et al. 2016). The NSQHS standards aim to improve the quality of health service provision in Australia and provide a nationally consistent statement of the level of care consumers can expect from HSOs."

Photo: by Thomas Drouault on Unsplash

New prescription monitoring system reveals thousands of Victorians are at risk of harm

Read full ABC News article

SafeScript aims to cut the growing death toll from prescription medicine dependency in Victoria. There now is talk about rolling out the program nationwide. What do you think about SafeScript? Join the conversation on our Facebook page.

"A newly implemented system monitoring prescriptions of potentially dangerous drugs has found more than 27,000 people are at increased risk of harm or overdose.

New data from the first month of Victoria's real-time prescription monitoring system has revealed nearly 15,000 people were red-flagged for visiting multiple doctors or pharmacies, and a further 13,000 people were recognised as taking excessive doses or risky combinations of medicines.

The SafeScript program, which allows doctors and pharmacists to access a central database of prescription records, was rolled out across Victoria on April 1 following a successful trial last year.

Over the past decade, the number of deaths involving prescription medicines has significantly increased, and in Victoria, now exceeds the road toll.

Photo: by Thought Catalog on Unsplash

Have your say

SURVEY

Share your views with the TGA

Deadline: Friday, 5 July 2019
Who: Therapeutic Goods Administration (TGA)

The Therapeutic Goods Administration (TGA) is seeking feedback from you and other health consumers in their 2019 TGA stakeholder survey.

Your feedback will help the TGA to report on their performance and identify areas to improve.

The survey takes around five minutes to complete. Have your say before the survey closes on 5 July.

Go to the TGA website to complete their stakeholder survey here.

CONSUMER REPRESENTATIVE OPPORTUNITY

Consumer advisor needed for project to reduce stillbirth in NSW

EOI deadline: Wednesday, 12 June 2019
Who: Clinical Excellence Commission; NSW Stillbirth – Safe Baby Bundle project working group

The Clinical Excellence Commission is seeking an interested health consumer to be part of the NSW Stillbirth-Safe Baby Bundle project working group.

The NSW Stillbirth – Safe Baby Bundle project was started by the Stillbirth Centre for Research Excellence (CRE) at the University of Queensland. The primary aim of the project is to support improvements to reduce stillbirth rates from 28 weeks gestation in Australia by 2023. The primary objective is to implement and evaluate the impact of a maternity care Safe Baby Bundle.

The consumer will need recent (last five years) experience of stillbirth in a NSW public hospital, either as a woman or partner and will use their unique perspective to help shape this project and change the way service is delivered.

Find out more and lodge an Expression of Interest (EOI).

SURVEY

Complete the National Pain Survey 2019 to have your say about pain management in Australia

Deadline: Sunday 16 June 2019
Who: Chronic Pain Australia

Our friends at Chronic Pain Australia have released the National Pain Survey for 2019.

This annual survey is the chance for people living with chronic pain to have their say about how pain is managed in Australia and what needs to be done to improve the consumer experience and provide people in pain better quality of life. If you have thoughts about how this can be achieved, make sure you have your voice heard and take the survey today.

Complete the survey here.

CONSUMER REPRESENTATIVE OPPORTUNITY

Health consumer participation in South Western Sydney needed

Deadline: n/a
Who: South Western Sydney Local Health District

Are you interested in how your local health services work? Have you been a patient or visitor with Primary & Community Health Services in the South Western Sydney Local Health District (SWSLHD)? Would you like to advocate for health consumer needs?

Primary and Community Health (P&CH) is currently seeking residents of SWSLHD interested in consumer participation to join the following committees:

Research Advisory Committee
Executive Committee
Medical Neighbourhood Steering Committee
Quality and Safety Committee
Policy Steering Committee

Learn more and apply

CONSUMER REPRESENTATIVE OPPORTUNITY

Consumer representative needed for Calvary National Clinical Governance Committee

Application deadline: Friday, 14 June 2019
Who: Calvary Health Care Services

The Little Company of Mary Health Care Ltd (Calvary) is looking for a health consumer representative to join their National Clinical Governance Committee (NCGC). The NCGC makes recommendations to the National Chief Executive Officer (NCEO) and the National Executive Leadership Committee (NELC) on issues relating to clinical safety, clinical risk, quality and scope of practice and professional accountability.

The consumer representative should be interested and have experience with Quality & Safety and Systems & Governance. Monthly meetings are proposed to take place on the second Wednesday of the month, 1-3pm in Sydney. Calvary will pay their consumer representative a sitting fee of $200 and training and mentoring will be provided as deemed appropriate by the consumer and Committee Chair.

Learn more and apply

CONSUMER REPRESENTATIVE OPPORTUNITY

Montefiore Aged Care is looking for a consumer rep to critique their consumer participation plan

Deadline: n/a
Who: Montefiore Aged Care

Montefiore is a Sydney aged care provider, offering residential care, home care and independent living. Montefiore is transitioning to the new aged care standards and is focussing on their consumer and care excellence.

They are looking for an older consumer representative with experience of home care or residential care to review and comment on their consumer participation plan.

The consumer representative does not need to live in Sydney as the critique can be done remotely but face to face meetings are also possible if you live locally. Montefiore will pay the consumer representative our recommended hourly rate of $42.03 for their work.

Learn more and apply

SURVEY

PROBE for real-world evidence

Who: Haemophilia Foundation Australia (HFA)

The real-world PROBE study is now available!

What is the impact of haemophilia and treatment on Australians? How can we have access to high-quality evidence about this?

With new treatments becoming available, this kind of evidence is particularly important. We need to be able to explain what it’s like to have haemophilia and the impact of different types of treatments. HFA’s advocacy relies on credible data.
The PROBE (Patient Reported Outcomes Burdens and Experiences) study is a great opportunity for people living with haemophilia to give this evidence and people living without a bleeding disorder to act as the comparison group.

What is PROBE?

PROBE is a multi-national research study (www.probestudy.org) which allows people with haemophilia to report their haemophilia severity, treatment history and the impact of haemophilia on their daily life. It compares their answers to other people in their community who do not have a bleeding disorder.

You are invited to complete the questionnaire if you are an adult (18 years+) who lives in Australia and:

Have haemophilia or carry the gene

Do NOT have a bleeding disorder.

You may also like to pass the survey on to your partner/wife/husband or other members of your family or interested friends.

The study needs a few hundred Australian participants for good quality results, so the more people who complete the survey, the better!

How to do the survey

The questionnaire is available:

Online at https://plus.mcmaster.ca/PROBE/
Or ask your local Foundation or HFA for a print survey pack

For more information about the PROBE study in Australia, visit www.haemophilia.org.au/research or contact Suzanne at HFA by email socallaghan@haemophilia.org.au or on 1800 807 173.

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.

Resources

A clinician's guide to consumer enablement

Visit the online guide and tools

This guide explains step-by-step what consumer enablement is and why clinicians should take the time to understand what is going on in their patients' lives.

Consumer enablement is the extent to which people understand their health conditions and have the confidence, skills, knowledge and ability to manage their health and wellbeing. The guide highlights a number of ways how clinicians can help people become true partners in their own care, working in collaboration with health professionals to understand their health, manage their symptoms and navigate a complex health system. and how this affects their ability to care for themselves.

The guide was developed by the NSW Agency for Clinical Innovation.

International toolkit - patient and public engagement in Choosing Wisely campaigns

Download the toolkit here

This is an evidence-based framework on patient and public engagement in international Choosing Wisely campaigns.

There are more than 20 countries worldwide with active or planned Choosing Wisely campaigns. Choosing Wisely International represents a collaboration of campaign leaders. One area of collaboration has been to develop an evidence-based framework on patient and public engagement in campaigns. The framework was inspired by an agreement that patient and public engagement in Choosing Wisely campaigns should be approached systematically and its efforts should be measured. This toolkit elaborates on the components of the framework with illustrative cases studies and examples of how campaigns are engaging patients and the public.

Events, workshops and more

Surviving and Thriving - mental health talk and community forum in Wagga

When: Monday, 17 June; 7.30 pm
Where: Kildare Catholic College Hall, Wagga Wagga

Tim Carey is a psychologist who works in a rural community. Often, families, friends or workmates wonder how best to support family members and friends when the road is tough for them. Come along to access information that may help. An opportunity to attend a FREE talk like this doesn’t happen every day. There is a FREE sausage sizzle on arrival.

Click here for more information and to register.

Consumer Enablement Spotlight Series - online webinar
Shared descision making

When: Tuesday, 11 June 2019; 9am - 12pm
Where: Virtual Forum - Virtual Meeting Room 4603248

The Consumer Enablement Spotlight Series is an online webinar that aims to shine a light on different consumer enablement interventions or approaches.

At each webinar, a different intervention or approach will be highlighted, with guest speakers invited to present on the theory behind the intervention, best practice examples, and insights into successful application.

The upcoming Spotlight Series will focus on Shared Decision Making. Shared Decision Making is a process where the clinician and consumer (and their family, partner or carer) make health decisions together.

Click here for more information and to register.

Reframing relatedness: Communicating with people with dementia
Carer Workshop and Launch of Dementia Carer Website

When: Friday, 26 July 2019; 9am - 5pm
Where: Room 203, RD Watt Building Science Road, University of Sydney

Building relationships is what life is about. Dementia creates challenges for relatedness. As a loved one changes, we need to find new strategies for communicating and engaging, thinking sideways, rethinking time and memory, rethinking what is important about communication. The best people to teach carers are other carers.

Family and friends who care accumulate valuable insights. Share your ideas and tips for other carers. Let’s identify what helped or hindered, practical strategies that may better enable effective communication across the dementia journey, and good ways to access such information.

Click here for more information and to register.

Women and Heart Disease Forum

When: Wednesday, 19 June 2019
Where: Roundhouse, University of New South Wales

Heart disease is a leading killer of Australian women, but it continues to be under-recognised, under-researched, and under-treated.

It can be an invisible killer – often going unnoticed and not openly talked about. In Australia, heart disease continues to take the lives of 22 women every day – with nearly three times as many women dying from heart disease as from breast cancer.

The 2019 national Women and Heart Disease Forum will bring together experts in cardiology, obstetrics & gynaecology, midwifery, emergency medicine, nursing, oncology, general practice, community and public health.

And congratulations to the organisers of the event for including women who have directly impacted by heart disease in the program!

Click here for more information and to register.

Collaborative Pairs - Invitation to apply

When: Group 2 will start in August 2019
Where: WentWest, Level 1, 85 Flushcombe Road, Blacktown

WentWest invites health and community services professionals and consumers to form a partnership to apply to participate in Collaborative Pairs Australia: an exciting opportunity to develop collaborative leadership skills and lead system change. This program is based on collaborative leadership programs developed by the Kings Fund in the UK and is delivered via a partnership between the Consumers Health Forum of Australia and the Kings Fund.

This program has been designed for pairs of health and consumer leaders from the same local health care system to work together to develop their collaborative leadership skills and apply these in a shared challenge/project.

Click here for more information and to apply.

Social Determinants of Health Webcast Series - Early Life

When: Webcast 2: 1 July 2019 | Webcast 3: 12 August 2019 | Webcast 4: 23 September 2019 | Webcast 5: 18 November 2019
Where: Online

There is widespread evidence demonstrating the relationship between the health and wellbeing of an individual and the environments in which they are born, grow, live, work and age.

The Centre for Healthcare Knowledge and Innovation, in partnership with Social Futures and Health Justice Australia, invite you to register for the Social Determinants of Health Webcast Series, delivered via your boardroom TV, desktop or anywhere you have Internet.

Click here for more information and to register.

The Power of the Patient Voice - AIHI Seminar Series

When: Thursday, 20 June 2019; 12pm – 1pm
Where: Seminar Room, Level 1, 75 Talavera Road, Macquarie University, North Ryde
Speaker: Maureen Williams, Patient Advocate

This unique and powerful seminar will enhance your understanding of the importance of patient voices in healthcare quality and safety. With over 40 years’ experience as a patient advocate, Maureen explores the possibilities of including patients in medical research, her work on quality and safety, the pitfalls of informed consent and the power of patient narrative in healthcare.

Click here for more information and to register.

Equity, Universal Health Coverage and Out-of-Pocket Costs:
Between policy choice and household impacts

When: Tuesday, 18 June 2019; 12-1pm
Where: CPC Seminar Room, Level 6, Charles Perkins Centre The University of Sydney

We now have copious documentation on the extent of out-of-pocket payments (OOP) in the Australian health system. Over 1 million Australians are facing challenges from OOP expenses, and a smaller number forgo care to avoid co-payments. Around 2 million forgo necessary dental care because of cost. All together Australia has one of the highest levels of out-of-pocket costs for health care in the OECD.

In this seminar, we explore how out-of-pocket costs play out in household budgets and discuss the ethical impact of these costs in terms of fairness, equity and access in health care.

Click here for more information and to register.

Research and academics

A lifeSPANS approach: Addressing child obesity in Australia

"We know that if we cannot prevent obesity in our children, those young Australians will likely never achieve wellbeing. We know that one in four of our children is overweight or obese and that while 5% of healthy weight kids become obese adults, up to 79% obese children will never realise a healthy weight. We know that the school years are a time when major weight gain occurs in our lifecourse and almost no one loses weight as they age.

Recent evidence suggests early, simple interventions not only reduce weight and improve the health for our youngest kids, but also reduce weight in their parents. An important network of effective implementation platforms and primed partners already exist in our schools and teachers around the nation. Finally, a large (but likely overstated) proportion of Australians may call “nanny state” at even the whiff of effective policies against obesity, but less so if those policies are aimed at our children.

Download the free paper here.

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