Copy

July 2019

View this email in your browser
 

"Watching my family watch me was the hardest part"
A word with... Brad Rossiter

Brad is a member of Health Consumers NSW and an outstanding patient advocate and health consumer representative who is happy to tell his story, as well as listen to others to help tell theirs.

At the age of five, Brad was diagnosed with on-set Type 1 Diabetes. He managed – played sports, moved to Batemans Bay, became a butcher, married, and had a child. But in 1996, his health took a turn for the worse. Kidney disease and eye troubles started catching up with him.

What were the hardest parts of your journey?

Between 2000 and 2007, life was not how I anticipated it would be. And it certainly wasn’t what I envisaged for my family – my wonderful wife Lorae and my son Trent and my brothers and parents – to also be a part of.

Watching my family watch me was the hardest part.

Dialysis is not a cure for renal failure, Dialysis is a treatment, some people survive on Dialysis for many years. Some people are fortunate to receive a kidney transplant. Some people choose not to have Dialysis…

But what always stood out for me was how lucky I am to have had the love of, and support from, Lorae, Trent, mum, dad, my brothers and family. A shout out also to all my friends and mates for keeping in regular contact – I really appreciate it!

To my double transplant donor and their family – thank you from the bottom of my heart.

Read the full interview with Brad here.

Our revised training suite

Health Consumers NSW offers training and education programs for both, health consumer representatives and health staff. We strive to increase the confidence of consumers and staff to implement health consumer engagement in any setting.

We are currently overhauling our training courses in terms of content as well as delivery and have made some changes to what we offer.

Services and consumers can choose from fully catered courses at our venues or we come to your health service or organisation to run our training.

Please contact our Training Manager, Emma Collins for all questions about our training.

phone: (02) 9986 1082
email: ecollins@hcnsw.org.au
Training at our venues
Consumer Representative Training (2 days)
For health consumers
This two-day course teaches all health consumer representatives about consumer engagement in the NSW health system.

It explains the concepts and practices and suits people relatively new to this role, as well as more experienced health consumer representatives.

It also provides a great opportunity for consumer representatives from different organisations to mingle, learn from each other and network. 

The program is fully catered and delivered from our office venue in Sydney’s CBD.

Training 3: Thursdays, 15 August and 22 August 2019
Training 4: Tuesdays, 5 November and 12 November 2019
 
Download the program flyer here.
Graduate Certificate in Consumer and Community Engagement (4 days)
For health staff
This nationally registered course is a four-day program for health service staff who work in consumer engagement.

Professional health consumer engagement staff will build on their skills and knowledge to work collaboratively and strategically alongside consumers, health services and government bodies. The course is aligned with the NSQHS – Standard 2.

Download the program flyer here.
Training at your organisation
Consumer Representative Development Training (2 days)
For health consumers
This two-day course incorporates our basic training plus it also provides the opportunity for consumer representatives to further develop a wide variety of knowledge and skills required for their role. 

Through workshop activities, peer-learning and facilitated discussions, your consumers will be confident and capable to work with you for the benefit of all health consumers in NSW.

You can book this training with us to run at your organisation at a date and time that suits your health consumer representatives.

Download the program flyer here.
Introductory Consumer Representative Training (1 day)
For health consumers
This one-day program introduces the concepts and practices of consumer engagement in the NSW health system. It provides an overview of the role of a consumer representative. Participants will develop the knowledge and skills for effective health consumer representation.

You can book this training with us to run at your organisation at a date and time that suits your health consumer representatives.

Download the program flyer here.
Consumer Engagement Training for Health Staff (½ day or 1 day)
For health staff
This one-day or half day workshop aims to equip health service staff to effectively and respectfully engage with consumers to improve health outcomes and patient experience within services. This training helps participants to understand the key factors which contribute to successful partnerships with consumers and community members, through the exploration of the Consumer and Community Engagement Model.

You can book this training with us to run at your organisation at a date and time that suits your staff.

For all questions or more information about our training suite, please contact our Training Manager, Emma Collins on (02) 9986 1082 or ecollins@hcnsw.org.au.
Personal and consumer stories

Mesh Lament

by Rodney Weber

Polypropylene is in my groin
Feeling pain all the time
With polypropylene in my groin
A small lump was diagnosed
Polypropylene is in my groin
Routine surgery I was told
Polypropylene is in my groin
Surgeon said it would be fine
With polypropylene in my groin
Complication rates are minimal
With polypropylene in your groin
The outside scar has healed just fine
With polypropylene in my groin
But I'm still sore on the inside
With polypropylene in my groin.
 
Struggling, struggling
I am struggling
Are you struggling too?
 
Prolene mesh is in my groin
Didn't know what I was in for
Prolene mesh always on my mind
Only method I was told
Prolene mesh is in my groin
It's a foreign body inside me
Prolene mesh is in my groin
And things aren't as they should be
Prolene mesh is in my groin
Prolene mesh always on my mind
 
Struggling, struggling
I am struggling
Are you struggling too?

PS. Rodney is one of the health consumers we helped to be part of the National Mesh Implant Forum: Unfinished Business in Melbourne in April this year.

News and current affairs
Unrecognised potential of Indigenous health workers and practitioners

Read full article by Karl Briscoe in MJA InSight+

"More often than not, A&TSI health workers and health practitioners have lived experience in and a deep understanding of the communities we serve, meaning we have cultural, social and linguistic knowledge and skills that set the workforce apart from other health professional groups. These skills underpin our community reach and engagement capability and, coupled with our comprehensive primary health care training foundations, enable our unique ability and perspectives as health care professionals, cultural brokers and health system navigators.

"Put simply, we are connected to our communities and have the relevant cultural intellect to understand the social and cultural dynamics that need to be considered to gain respect and trust in shaping appropriate health care interactions. Highly relevant and sometimes very subtle dynamics, practices and protocols are easily missed or misunderstood by people from outside the community and can be potentially detrimental to safe and effective health service delivery. I draw on my own professional experience as an illustration."

 

The 'eight-minute' cure: how transvaginal mesh sentenced thousands of women to a life of pain

Read full SMH Good Weekend article

This article by Amanda Hooton and Joanne McCarthy provides a good overview of the current state of transvaginal mesh in Australia and also tells some personal stories. 

"Since its introduction in the late 1980s, somewhere between 7000 and 18,000 women have experienced complications from mesh surgery in this country. This figure echoes as many as 200,000 cases reported overseas. In what one surgeon has called a "tragic, two-decade-long free-for-all", these women were victims of often poorly trained doctors, using devices that, in many cases, lacked scientific evidence of safety or effectiveness, without being properly informed of what was being done to them.

"In this country, most mesh surgery training was facilitated by mesh manufacturers themselves (with all the potential for conflict of interest this creates); the Therapeutic Goods Administration (TGA) required no independent clinical evidence about many of the transvaginal prolapse mesh devices it cleared; and according to a 2017 survey of 1900 women by the Health Issues Centre, a Victorian health consumer peak body, more than 60 per cent of women did not give informed consent."

What social media analytics can tell us about patient advocacy

Symplur is a healthcare social media analytics company based in the US and most of the data is in a US-context. Nonetheless, these two blogs by the company highlight some interesting facts and developments in the health consumer representative space.

Begging to Work for Free — Patient Advocates Speak Up

A tweetchat leads to an unprecedented, public discussion about the multi-faceted costs of patient advocacy and the concept of begging to work for free. Read the story

Doctors Up, Patient Advocates Down: Diverging ASCO Twitter Engagement

In stark contrast to the growth of Doctor engagement, we’re surprised to observe declining Patient Advocate engagement at ASCO (American Society of Clinical Oncology). After receiving over 1,500 responses to our two tweeted graphs, we had to write up the story. Read the story
If doctors have a duty of care to all, why crowdfund for surgery?

Read full the Guardian Australia article

How much money would you give to save the life of a terminally ill patient? It turns out a lot – enough to restore one’s faith in humanity that, even in this crazy world, we can stop to care for the plight of a stranger. But are you entitled to know how your money is spent?

It’s possible that a crowdfunding appeal to help a grieving family reunite with their terminally ill son would have elicited the same response but the promise of contributing to a cure for cancer had been far more poignant...

... Many of my misgivings about crowdfunding for cancer treatment returned when an ugly social media exchange recently ensued in Australia over a prominent neurosurgeon being asked by an academic hospital surgeon to explain why cancer patients were turning to crowdfunding to afford the large fees for his operations. The operations occur in the private hospital system and are typically those that other surgeons have declined to perform, deeming the risks to outweigh the benefits.

Photo: by Павел Сорокин from Pexels

Have your say
CONSUMER CONSULTATION WORKSHOP AND SURVEY
National Safety and Quality Primary Health Care Standards - Consumer consultation workshop 

Workshop date:
Tuesday, 16 July 2019; 11.45am - 2pm
Where: YMCA Broken Hill Integrated Wellness Centre
Who: Australian Commission on Safety and Quality in Health Care (the Commission)

The Commission is consulting nationally to better understand the safety and quality issues experienced by patients in primary health care. The information gathered at these consultative workshops will develop the National Safety and Quality Primary Health Care Standards.

Click here to register for the Broken Hill consultation workshop.

Survey: Alternatively, please complete this survey. The survey includes topics that will be explored during the workshops. 

Please contact Hanna Pak on 02 9126 3635 or hanna.pak@safetyandquality.gov.au and visit the Commission’s website for more information about the National Safety and Quality Primary Health Care Standards.

RESEARCH STUDY PARTICIPATION

Take part in a study about ethical practice in telehealth service delivery

Deadline: Thursday, 31 October 2019
Who: Flinders University

You are invited to attend a one-on-one interview with Amanda Keenan - a public health Doctoral student - who will ask you a few questions about your experiences of receiving telehealth services in your home. The interview will take about 60 minutes and will be done online. The study is part of a project entitled Ethical Practice in Telehealth Service Delivery. The aim is to explore the experience of telehealth clients to create better services.

Research participants will receive a $50 EFTPOS gift card.

Click here to find out more and take part in the study.

SURVEY
Jean Hailes - Women's Health Survey 2019

Who: Jean Hailes

The Jean Hailes annual Women's Health Survey is one of the country's most revealing insights into the health concerns and needs of women in Australia. Results of the online survey are used in many ways; from identifying gaps in health information, to helping health professionals better understand their patients, to encouraging women to make practical, positive changes to their lives.

The survey is online and it takes just 10 minutes. Every response counts. The more women who participate, the more we can create a true snapshot of the state of women's health today

Complete the survey here.
RESEARCH STUDY PARTICIPATION

Help improve dietetic services for people with type 2 diabetes

Who: University of Sydney

Do you have type 2 diabetes? Do you want to help improve dietetic services for people with type 2 diabetes?

A research team at the University of Sydney wants to improve dietetic services for people with type 2 diabetes. It has been shown that better blood glucose levels are achieved when a person sees a dietitian but this doesn’t always happen. The researchers will be conducting telephone interviews to find out what is happening with dietetic services for people with type 2 diabetes.

If you would like to get involved, please send an email to Georgios Siopis, (PhD student at the University of Sydney) at gsio7745@uni.sydney.edu.au. In exchange for your time you will receive a $30 gift voucher.

CONSUMER REPRESENTATIVE OPPORTUNITY

Join SIRA's stakeholder forum to represent people who are involved with motor accidents injury claims 

Deadline: Friday, 12 July 2019
Who: State Insurance Regulatory Authority (SIRA)

SIRA hold a quarterly forum with representatives from various stakeholder groups to discuss the operations of the Compulsory Third Party (CTP) Scheme. This forum includes representatives from the legal profession, insurers and medical profession. SIRA is now looking for members to represent the customer.

They are looking for people who have had experience with the 2017 CTP Scheme after being in a motor vehicle accident to join the forum. The next meeting is on Thursday, 8 August 2019 in Sydney.

Click here to learn more and express your interest in joining the forum.

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

MedecineWise app

Learn more and download the app

If you regularly have trouble with managing your medicines and health info, then the MedicineWise app can help.

With this app you can easily keep track of medicines and access important health info any time and anywhere, especially in emergencies.

Perfect for those with multiple medicines, busy lifestyles, or carer responsibilities

Help Teach Ted improve kids’ medical experiences

Learn about Teach Ted or purchase the book and materials here.

The other week, we went to the launch of Teach Ted. What a fantastic resource for parents to prepare their little ones for a hospital or medical procedure and for health service providers who offer paediatric services.

"The key to any interaction in hospital is TRUST. Without it, a simple procedure can become difficult and a difficult procedure can become impossible."

Isn't that true, not just for kids.

Avoiding burnout: empathy v compassion

Read the MJA InSight+ article

Empathy and compassion are multifaceted, dynamic concepts that are often confused with each other as they are etymologically related...

However, differentiating between these distinctive concepts is imperative if we want to ensure our health care providers can offer better mindful “compassionate care” to their patients, and ultimately avoid the risk of drifting into emotional empathic distress and subsequent burnout. For the purpose of this article and for simplicity’s sake, both notions will be voluntarily differentiated between the ability — or not — to distance ourselves from another person’s suffering, and the impact of sustained emotional empathy versus compassion from a medical standpoint will be explored.

New forum for patients of rare blood cancers, Myeloproliferative Neoplasms (MPNs)

Website: Visit the new website for patients of rare blood cancer
Forum: Go straight to the forum on the site

Myeloproliferative Neoplasms (MPNs) are blood cancers that occur when the body makes too many white or red blood cells or platelets. This overproduction of blood cells in the bone marrow can create problems for blood flow and lead to various symptoms.

When Steven Shah was diagnosed three years ago, there was very little information out there (in Australia), concerning MPNs, what they are and how they might impact upon one's Quality of Life.
 
So he decided to do something about it. This website is a patient's website run by patients, for patients. However, it also conveys a great deal of very useful professionally supplied medical information concerning MPNs, and their various symptoms, and treatment options.
 
Far more importantly, it allows patients to talk with and reassure each other concerning their MPN. Many people are still learning about MPNs, as the 'Driver Mutations' that are thought to cause them were only recently discovered (c. 2005-2013). Not surprising then really that most GPs, and many practicing specialists, presently remain completely unaware of what MPNs are, and how they might impact upon those afflicted.

Engagement in Health Research Literature Explorer

Go straight to the Patient-Centered Outcomes Research Institute's new explorer

Finding literature on engagement in health research can be challenging, because there are no standard search terms or language for describing what engagement means in this context. So, PCORI staff members have put together a searchable list of publications on engagement in health research, selected through a process described here.

This resource is sortable by article topic type, types of stakeholders engaged, and phase(s) of research in which engagement occurred, from identifying research questions to sharing study results. Articles are listed if they met our search and inclusion criteria.

Events, workshops and more
Invitation to health consumers to submit an EOI for a Consumer Scholarship to attend the ARCS Australia 2019 Annual Conference

Application deadline: Monday, 15 July at 9am AEST

ARCS Australia is a non-profit member-based organisation providing professional development to the therapeutics industry (clinical research, regulatory, medical affairs and safety professionals working in non-commercial and commercial organisations). Each year, ARCS Australia holds a 3-day conference to provide its members with an opportunity to hear updates from relevant agencies, share learnings, and discuss the future of the industry.

In 2019, the conference will be held at the International Convention Centre, Darling Harbour in Sydney on 6-8 August. The theme of this year’s conference is ‘Putting patients at the centre of healthcare’. More information about the conference, including the program, is available here.

In accordance with the theme ARCS Australia is offering for the first time a number of scholarships to cover the cost of registration (not travel) for health consumers with an interest in becoming more acquainted with how the industry works, the challenges and opportunities being faced, and networking with those developing the next generation of therapeutics.

All health consumers with a genuine interest in learning and collaborating with the sector are welcome, though some knowledge of the therapeutics industry and research/regulatory environment in Australia may be helpful.

Click here for more information and to apply for a consumer scholarship.
Nominations are open for NSW Volunteer of the Year Award

Nominations close: Friday, 12 July 2019

The NSW Volunteer of the Year Awards have grown to become one of the largest celebrations of volunteering across the country.

The Awards are now in their 13th year and celebrate the efforts of our state’s volunteers across seven different award categories. More than 2,500 special guests, families and friends attend ceremonies at 20 locations across regional and suburban centres to celebrate the regional winners of the volunteer awards.

Finalists are invited to the Gala State Ceremony in Sydney to announce the final winners and overall NSW Volunteer of the Year.

Click here for more information and to nominate a volunteer for a 2019 award.

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.

Free ELDAC workshops to help you meet new standards

When: Tuesday, 16 July 2019 in Orange and Tuesday, 30 July in Albury

Starting in July 2019, a series of workshops will be run across Australia for residential and home care managers, nurses and care workers.
The workshops are free to attend and are hosted by the End of Life Directions for Aged Care (ELDAC) project, a national project funded by the Australian Government Department of Health to improve palliative care and advance care planning for older Australians.
Attendees will be introduced to ELDAC through demonstrations and interactive activities, which will assist you and your organisation in meeting the new Aged Care Quality Standards.

Download the ELDAC workshops flyer to hang in your office or register now on the ELDAC website!

Become a HCNSW member - it's free to join!
Facebook
Twitter
LinkedIn
Copyright © 2019 Health Consumers NSW, All rights reserved.


unsubscribe from this list            forward to a friend

Email Marketing Powered by Mailchimp