Category: HCCWA Blog

Last week I was lucky to be able to travel to Melbourne and participate as a consumer/Lived Experience representative in a couple of conferences.

The prompt for my trip was to attend the International Congress on Obesity (ICO) – I was part of a group of Lived Experience advocates, including some of the team from the national Weight Issues Network. This is a large conference – around 1,000 people from all over the world – that takes place every two years. This was the first year that people with lived experience were explicitly included.

As I was going to be in Melbourne anyway, I also went along to the Wild Health Digital Health summit. I was alerted to that by regular posts from someone I’m connected with on LinkedIn.

It was a massive week of learning, reflection, observation, and ideas sparking. It’ll take a while for me to make sense of everything – but here are some initial cross-cutting reflections from the two events. Some of these are reiterations of things I’ve known, others are new.

I think it’s time for a revolution in how we think about consumer, carer and lived experience input.

• Having a consumer/lived experience perspective in the room changes the nature of the discussion
• Speaking up when I’m the only, or one of very few, people with a consumer/lived experience perspective requires extra energy from me – I need to prepare for that and factor in recharge time
• We need to move away from the idea that it’s ok to only have a handful of people with consumer/carer/lived experience perspectives in a room when there are hundreds of other people with professional/learned experience perspectives
• There must be consumer perspectives at every table where decisions that impact us are being made – this includes at the highest levels of government: for example, when health service funding models are being conceived and developed
• This mean organisations need to step up their level of investment in building capacity of people with consumer/carer/lived experience perspectives to also become “learned experience” experts – particularly in technical areas – while retaining a consumer/carer/lived experience lens.

Speaking truth to power

In many of the discussions I was in last week, I very much felt a responsibility to speak consumer and lived experience perspectives into the room.

There is currently no democratic forum in Australia where consumers, carers, and community members can hold our elected representatives to account for the state of our health and social care system.

We are required to talk to our State representatives on State-funded issues and our Federal representatives on Commonwealth-funded issues. I believe this is a massive contributor to the ongoing tolerance of a highly fragmented health and social care system. It is essential that consumer and lived experience perspectives are spoken into every discussion that impacts our health and social wellbeing – so that people can move away from “meh, what are you going to do?” to “right, what are we going to do?!”.

Time to “professionalise” the consumer/lived experience voice?

I am hugely privileged in that I have a paid job in consumer/lived experience systemic advocacy and engagement. This means I have time to connect with a wide range of people with diverse consumer, carer and lived experience perspectives, and I also have time to read (some of!) the tsunami of government and academic papers that are churned out relentlessly about how to improve our health and wellbeing, as well as the systems that support them. Reading these with a consumer lens can result in quite a different interpretation than some other lenses.

But at a very rough calculation, I’m probably one of approximately 200 people[1] across Australia who have that privilege. Compare this with 642,000 health practitioners working in their registered professions[2] in 2020 and a further 588,000 people[3] working in welfare roles. And that doesn’t take into account people working in health and social care policy/government roles.

So even if everyone of those 200 people in paid systemic advocacy roles are superstars (which I’m sure many of them are), there is no way they can be in every high level policy/agenda setting discussion where a consumer/lived experience perspective is required!

As an example: one of the speakers at the Wild Digital Health Summit commented how positive it was that there were now 32 Chief Nursing and Midwifery Information Officers across Australia. It occurred to me,

…what might it be like if we had 32 Chief Consumer Information Officers across Australia?

Building consumer leadership capacity and technical knowledge – while staying grounded in lived experience

When I was at the Wild Health Summit, I was very aware of my lack of technical knowledge of the subject. (At one point, the fabulous Heather Grain was introduced on a panel as being an expert in “fire” – which I thought was interesting, but not that relevant. I have subsequently learned that they said FHIR which stands for Fast Healthcare Interoperability Resources!)

So I’m left thinking – how do we ensure that there are enough people with both a strongly grounded consumer/lived experience focus and the technical knowledge to be able to add real value in some of these more technical discussions?

I wouldn’t start from here…

Another area that I think urgently needs more people with a grounded consumer/lived experience lens and technical expertise is that of health and social care system funding models.

At both the Wild Health Summit and the ICO event, the consequences of our current funding models for health and social care came up. Both the fee for service/Medicare funded primary care system, and the activity-based funding model in hospital services, incentivise clinicians and healthcare organisations to “do more things”.

How can we have a system that is focused on prevention of ill-health, and promotion of health and well-being, when we’re incentivising the system to deliver more healthcare?

The time is now

At a recent consumer/lived experience representative network event in WA, we discussed the need for a consumer/lived experience/community-led summit on health and social care.

If we as a community don’t take the lead on outlining our requirements for a system that truly focuses on the health and wellbeing of the people in the community, we will see the consequences of a health and social care system that is designed to meet the many and varied vested interests of people and organisations who are tasked with delivering that care, rather than the people who experience it.

Now that I’m back to my day job, I’m going to be thinking about how I can play my part in building this social movement for change.

Clare Mullen, October 2022

[1] Based on 6 states and 1 territory with a peak health consumer body, plus 3 other organisations, with an average workforce of 5 people focused on systemic advocacy; plus a Council of Social Services in each state and territory; plus national consumer/lived experience bodies

[2] https://www.aihw.gov.au/reports/workforce/health-workforce

[3] https://www.aihw.gov.au/reports/australias-welfare/welfare-workforce

[4] https://www.ipaa.org.au/latest-abs-public-sector-employment-figures-now-available/

It’s been a busy few weeks for our team – here’s a selection of some of the meetings and events we’ve been part of…

• Meeting with the WA Council of Social Services to discuss work happening on partnership in relation to the WA Sustainable Health Review (SHR)
• Meeting with Helping Minds to discuss shared interests
• Promoting consumer perspectives as part of the East Metropolitan Health Service Obesity Prevention Strategy Implementation Committee
• Meeting with East Metropolitan Health Service to discuss ways of getting consumer input to inform plans for a weight management clinic
• Promoting consumer perspectives as part of the East Metropolitan Health Service Weight Management Clinic model of care project reference group
• Hosting a community conversation about the WA consultation on Assisted Reproductive Technology and Surrogacy Acts to inform HCC’s submission on this topic
• Meeting with the consumer organisations in other states and territories to discuss how we can have more of a state consumer voice on national issues – such as primary care reform
• Meeting with the Department of Health to discuss our new contract arrangements (which will kick in from 1 January 2023)
• Meeting with the Department of Health to understand the state position on Long COVID
• Attending the launch of the Consumers of Mental Health WA launch of their new individual advocacy service for people with psycho-social disability
• Call with Cancer Council WA about running consumer focus groups
• Taking part in cultural responsiveness training
• Hosting two consumer forums – funded by the WA Department of Health – on the experience of multicultural men and multicultural people living regionally in relation to cancer care and information
• Taking part in the Care Opinion national advisory group
• Meeting with the team at the National Justice Project about the next steps with the Aboriginal Patient Advocacy Training
• Promoting consumer perspectives at the Emergency Access Reform Program Control Group
• Delivering our first fully virtual consumer representative training workshop
• Meeting with the Department of Health to discuss the work on SHR Recommendation 23 in relation to clinical and consumer leadership
• Meeting with the WA Primary Health Alliance to support consumer involvement in the development of a model of care for chronic heart failure
• Meeting with the WA Country Health Service to help them access consumer-facing materials about engaging with health services
• Meeting with the Department of Health about sexual health and blood borne viruses
• Meeting with Consumer and Community Involvement Program (CCIP) and a consumer leader to discuss opportunities to connect consumers, carers and community members with lived experience of cancer – planning a community conversation in October
• Meeting with the Department of Health to discuss communities of practice
• Taking part in an online forum on COVID Antivirals
• Attending the launch of the refreshed Live Lighter campaign
• Promoting consumer perspectives in a meeting with the WA Enrolled Nurses Cooperative hosted by Community Skills WA
• Hosting a community conversation about the reality of “living with COVID” with Professor Grant Waterer
• Meeting with the Department of Health about their plans to involve consumers in the development of a WA Safety and Quality strategy.
• Meeting with Community Legal WA and the WA Financial Counsellors Association to discuss shared interests and possible collaboration opportunities
• Meeting with People With disability WA to discuss the Empowering Health Consumers With Disability training we are running together
• Attending Clinical Services Redesign Methodology training with other people involved in the Emergency Access Reform program across WA Health
• Meeting with Asthma Australia to discuss shared interests
• Hosting a cultural sensitivity training with a private hospital
• Hosting an online workshop on Acknowledging Country (find out more about these workshops and sign up at https://www.eventbrite.com.au/e/acknowledging-country-tickets-414587019937
• Presenting – alongside two consumers – on the lived experience of overweight and obesity to 3rd year medical students at Curtin University
• Meeting with the Department of Health and the WA Primary Health Alliance about the work on the WELL Collaborative (WELL = Weight Education and Lifestyle Leadership)
• Talking on the ABC Perth morning show about the implications for consumers of the one-off public holidays on 22 September

This is only part of the work HCC does. At the same time, our Advocacy team have been responding to individual consumer enquiries every day providing both “in the moment” support, and also longer term support and advice to consumers who’s enquiries require involvement over a longer period of time.

Can you help us build a social movement in health?

At Health Consumers’ Council, we believe in people power. Through our engagement and partnerships work, we are building a social movement in health – where the people who use health and healthcare services, and the people who work in them, can work together to identify priorities for improvement and make positive and lasting change.

We’re looking for a can-do person to join our team and help us extend our reach to more people in the community who use health and social care services, as well as reaching more of the people who work in them.

Health Consumers’ Council WA

The Health Consumers’ Council of WA (HCC) is an independent community-based organisation which was established in 1994, representing the consumer’s voice in health policy, planning, research, and service delivery. We stand for equitable, person-centred, quality healthcare for all West Australians.

About the Role

This role is based in the Engagement team and is for an initial period of up to 2 years with the possibility of extension. As well as managing your own projects and activities, you will also provide support to other members of the Engagement team including the Aboriginal Engagement Coordinator, the Cultural Diversity Engagement Coordinator, the Marketing and Communications Coordinator and the Deputy Director.

This is a full-time role based between our offices in Mount Lawley and your home. For the right person, we may consider part-time options, but ideally we’re looking for someone who can be available to work 5 days/week.

What We Offer

•  A friendly and supportive team that’s making a tangible difference in the community
• A competitive not-for-profit annual base salary – Level 4 Social Community Home care and Disability Award ($39.26/hour + super)
• Salary sacrifices up to $15,900 per annum
• An engaging and flexible working environment
• The opportunity to work on a wide range of projects and to learn practical skills on the job.

What you’ll be doing

This is a mixed role with lots of variety so you’ll get the chance to work on a range of projects and activities within the Engagement team’s portfolio including:

• Delivering training and presentations to a range of groups including consumers, carers, community members, people with lived experience and staff working in government, health care and social care
• Planning, organising and delivering events and workshops – including virtual, face-to-face and hybrid (both virtual and face-to-face)
• Analysing feedback from events and workshops and creating reports to share this information with a range of stakeholders
• General engagement project coordination including
• preparing, monitoring and reporting on project plans
• liaising with project stakeholders to ensure tasks and deliverables are achieved in line with project plans
• monitoring and reporting on project budgets
• responding to enquiries from a wide range of stakeholders about engagement and partnership practices and programs, including providing advice
• creating and distributing engaging content for a range of platforms including social media, website, email, MS Teams and publications
• helping to recruit and support volunteers to support HCC’s activities.

What you’ll need to succeed in this role:

• Excellent literacy and writing skills and strong communication and interpersonal skills
• Experience in a people-facing role such as customer service or stakeholder engagement and a love of connecting with people
• Experience in organising meetings, workshops or events
• Collaborative working style with an ability and willingness to muck in with other team activities as required
• Be able to work autonomously and within deadlines, including managing a number of projects at the same time
• Proactive, reliable and flexible attitude and comfortable working in a fast-paced adaptive environment
• Highly proficient general office IT skills for day to day office activities including the ability to quickly learn to become very comfortable using MS Word, MS Teams and MS Powerpoint – and using MS Excel for organising and sorting data – and comfortable learning new IT skills quickly and with minimal input as required

If you’ve had experience of stakeholder engagement or working with volunteers that would be great. And if you have other skills and experience that you think makes you a great fit for this role, please tell about those too!

Diversity and inclusion

At Health Consumers’ Council we know that strength comes from diverse perspectives being at the table. If you require any adjustments to submit your application, we invite you to get in touch with Clare Mullen via email clare.mullen@hconc.org.au or call reception on 08 9221 3422.

Please read the attached position description for more details – please refer to the criteria in your application.

• Click here to download the job description

To apply for this role, please send us an email (to info@hconc.org.au) and a copy of your resume and tell us:

• What is it about your professional or life experience that makes you a good fit for this role? (Please make it clear how these relate to the tasks and criteria in the position description in your response.)
• Why do you want this position?
• How do you see yourself helping Health Consumers’ Council to deliver on our plans?
• What do you look for in a working environment that can help you thrive?

Next Steps

To be considered for this opportunity please email applications to info@hconc.org.au by no later than 9am on Tuesday 27 September 2022.

Sustainable Health Review – update on health workforce issues

The Sustainable Health Review is a wide reaching and ambitious reform program. After an extensive consultation process the Review was published in 2019 and includes 30 recommendations, organised into eight enduring strategies.

Some of the work was paused as the health system responded to the COVID pandemic, but as we move towards living with COVID we’re starting to see action and progress on a number of the recommendations. You can see more about HCC’s involvement in this work at https://www.hconc.org.au/what-we-do/policy-development/sustainable-health-review-consumer-view/

Issues relating to the workforce and culture of the health system were included in the Review, and there are five recommendations that cover these issues.

Find out more about health workforce issues

Health Consumers’ Council hosted a consumer information session to share what we know about work that is happening as part of the Sustainable Health Review on workforce issues.

• Click here to see the slides from that information session
• Click here to view the Zoom recording of that information session

Consumers have their say

Health Consumers’ Council hosted two consumer consultations for the Department of Health on one of the recommendations on this topic on 26 July 2022.

Recommendation 26 – Build capability in workforce planning and formally partner with universities, vocational training institutes and professional colleges to shape the skills and curriculum to develop the health and social care workforce of the future.

You can view the post-its that were created as part of these online discussions

To be added to a mailing list to be kept informed about this work, contact Clare Mullen clare.mullen@hconc.org.au

(Last updated 29/07/22)

The Health Consumers’ Council of WA unequivocally stands for the rights of all people to access legal, safe, timely and compassionate abortion care as essential healthcare.

Today we join many people and organisations across Australia and add our signature to the Australia position statement on the Roe v Wade decision in the US published by Children by Choice.

We welcome the statement by the WA Minister for Health in support of reproductive rights and equitable access to abortion for women and people with uteruses across Australia. We support the WA safe access zone legislation that protects the rights of people accessing abortions to do so safely and free from harassment or intimidation.

However, we know that accessing free, high quality, comprehensive abortion care in WA can be difficult for some people. Factors including where someone lives, their financial situation, the availability of clear, accessible and culturally appropriate health information, and the availability and affordability of healthcare, can all impact on someone’s ability to access the care they need. We also know from MSI Australia that First Nations’ peoples, trans and gender diverse peoples, members of migrant and refugee communities, people on temporary visas, and people with disabilities can face additional barriers to abortion care that are further impacted by age, economic status, stigma and discrimination.

We will continue to speak up – alongside our partners in WA – for improved, ongoing, timely and affordable access to these vital health services for all.

Health Consumers’ Council WA provides advocacy support to people accessing health services in WA. See https://www.hconc.org.au/individual-advocacy/

By Clare Mullen, A/Executive Director, 07/03/22

World Obesity Day 2022 – everybody needs to act!

World Obesity Day is marked on 4 March each year. The theme this year is “everybody needs to act”.

At Health Consumers’ Council (HCC) we’re acting by taking on the responsibility for hosting the WELL Collaborative (Weight Education and Lifestyle Leadership) – see below.

World Obesity Day is… complicated.

I know some people see it as a day when people in larger bodies are demonised. They utterly reject the term obesity and question the science that’s referred to as showing a link between increased weight and poorer health outcomes.

I have concerns about these too.

But I also know that many people in the community have negative health experiences relating to obesity. Whether that’s concerns about weight related health issues, or the mental health impacts of weight stigma and bias.

And so, through our work at HCC, we put forward the wide range of consumer perspectives that we’ve heard, while also going where there is political will, and some resources – and for now, that is obesity. (See below for more information about how we’re trying to change the conversation through promoting consumer and lived experience voices on this topic…)

I had the chance to take part in a couple of events last week to mark World Obesity Day. There is so much great work happening in this area but I’m particularly excited to see the momentum and recognition building for the need for diverse lived experience voices to be leading this work.

A couple of organisations that are worth following on social media, or subscribing to their mailing lists:

• Australia: the Weight Issues Network. This is a group led by and for people with lived experience of weight issues. They run regular community conversations where members can learn about various aspects of the science of obesity – as well as advocating for more understanding of the personal aspects – find out more at www.auswin.org.au
• Europe: the European Coalition for People living with Obesity. This group works collaboratively across Europe to improve the lives of people who are living with and are affected by the chronic disease of obesity through advocacy, policy and education. They run regular “patient lounge” discussions with consumers and researchers – find out more at https://eurobesity.org/

I really believe that only by raising lived experience voices in this space will we see real lasting positive change.

But it can be difficult to raise your head above the parapet in this space as a person with lived experience – particularly for people impacted by severe obesity.

We’ve all been so immersed in the idea that our weight is “our fault” that body shaming and judgement are practically sanctioned by some public health campaigns (grabbable gut anyone?).

And so health services and systems who want to hear more lived experience perspectives have to collectively invest in supporting people to develop their confidence to share their personal experiences in public settings for the greater good, and in creating safe places for those conversations to take place.

We’re lucky in Western Australia that the WA Department of Health and the WA Primary Health Alliance have recognised this and continue to support WA consumers to be heard on this topic.

Putting the public back in public health

I first heard the phrase “Putting the public back in public health” in a WA Department of Health publication, led by Professor Tarun Weeramanthri when he was the Chief Health Officer there.

It has stuck with me since. I think it’s because I see that so many of the elements that impact on our health and wellbeing are factors in the realm of our social worlds, rather than in the realm of our clinical experience.

This idea sharpened considerably for me when I took on HCC’s involvement in what was then called “The Obesity Collaborative – Partners in Change” project. A forward thinking team at the WA Department of Health and the WA Primary Health Alliance gave HCC a small grant to gather consumer insights so that work to address the health impacts of obesity was grounded in the experience of people with lived experience.

That work led to a survey with 750 responses, 25 first-person accounts, and two videos featuring consumers sharing their perspectives – perspectives that were shared at the two Summits on the subject in 2018. (You can see that work here.) That work shaped the development of the WA Healthy Weight Action Plan.

What emerged from all the stories and feedback people shared was:

• people’s experiences relating to weight and health vary widely. This is backed up by the academic literature which highlights the heterogeneity of people’s experiences of obesity.
• weight bias and stigma is a huge public health issue that is under-recognised by health professionals and public health teams. Academic evidence suggests that in some cases, the health impact of weight stigma can be more harmful than the health impact related to weight.
• that many of things that people turned to when seeking to address this issue were non-clinical. One hypothesis for this that diet culture needs us all to feel individually responsible for our weight so that we will buy programs and products that promise the holy grail of long-term weight loss.

Another personal observation for me was the role that our current economic model plays in our health. Whether it’s because there is limited regulation of the food industry (because #profit), or because people living on no/low-incomes are dealing with a whole range of issues including how to make ends meet, or because we are encouraged to believe we should be so committed to our jobs that we’d rather miss a meal than an important meeting – the economic environment has a huge impact on our health and health inequity.

Partnering with consumers – in implementing positive change

The value of lived experience perspectives in the Healthy Weight Action Plan was recognised as essential and another grant from the Department of Health enabled HCC to gather more consumer insights to support the implementation of the Plan. (Again, kudos to the Department of Health for their forward thinking approach. Too often “consumer engagement” stops once the plan is published.)

That grant enabled HCC to gather insights from people with diverse perspectives on the topic including Aboriginal people, people from culturally and linguistically diverse communities, men, young people, and people with disability. It also enabled us to ensure that consumer perspectives shaped the critical activities being implemented as part of the plan. In this way, consumers or consumer perspectives were involved as projects were shaped and developed including:

• Scoping a new proof of concept program offering virtual support to consumers who were using evidence-based very low calorie diet products
• Scoping commissioning standards for DoH and WAPHA to use when commissioning services in this area
• Scoping and refining the collaborative approach to addressing this issue in WA ↓↓

Introducing the WA WELL Collaborative!

The WA WELL Collaborative (WELL = weight education and lifestyle leadership) is the culmination of many hours of work by many teams of people across the community and the health sector.

The WELL Collaborative is a network where everyone with an interest in addressing the health impacts of weight, overweight, and obesity can come together. Whether that’s to find information about existing services, where consumers can be connected with clinicians and researchers who are working on new concepts, or to share challenges and wins about working in this very complex field.

One main way that people can access the network is through our freshly launched website:

• www.thewellcollaborative.org.au

You can sign up there to receive regular updates about Collaborative activities. The website is a living site and will be updated regularly.

HCC, WA Department of Health and WA Primary Health Alliance – taking action

I’m delighted to say that HCC has been given a grant by the WA Department of Health and the WA Primary Health Alliance to enable us to continue to ensure that lived experience voices continue to shape and drive this work. Part of our role is to host the backbone function of the WELL Collaborative. In practice this means hosting different networks, organising events, and managing the website.

The first thing I’m really proud of is the name – originally in the Plan this group was going to be the Obesity Collaborative. But since we started talking to consumers, it was clear that the term “obesity” was not one they connected with. It has become widely understood in the community as a pejorative term – and so, unsurprisingly, many consumers aren’t drawn to it. And so when working on a brand and name for the network, we made sure that was clear to the team developing those.

(Note of caution… we know that some consumers are very comfortable with the term and have questioned how other people like them – who are seeking help for the health impacts of obesity – will find their way to the website. We are addressing that through the data we use for search engine optimisation and our communications with other partners.)

The other ways that consumers have shaped this network include the imagery that has been used, and the focus on weight stigma.

Representation matters

We regularly hear from consumers in larger bodies that they are tired of never seeing any positive images when discussing weight and health. They want to see themselves reflected in images that reflect their lives – which are not all doom and gloom. So we connected the website team with a number of the image libraries that have been curated by various groups around the world.

Weight stigma – a major public health issue

A major finding from our work with consumers was the impact that shame, embarrassment and stigma has on people’s health. Whether that’s explicit bias being expressed by health professionals, or implicit in the body language; or it might also be internalised weight stigma – where we’ve been brought up to believe (incorrectly) that we are entirely responsible for our weight and so if we aren’t able to shape our bodies the way we want to, then it is a personal failing. All of these can input on our health – if we don’t receive the correct healthcare advice and treatment because of incorrect assumptions based on our size; if we don’t reach out for treatment because we’re embarrassed our efforts haven’t worked, or if we cope with body shaming by opting for less healthy behaviours.

HCC will be doing a lot more on this topic in the coming months – so watch this space.

But for now, check out this video where consumers talk about their own experiences of weight stigma in health services, and find out what you can do to become aware of any unintentional bias you may hold at www.hconc.org.au/end-weight-stigma

Currently, any medical practitioner in Australia may call themselves a surgeon or cosmetic surgeon, without completing specialist surgical training. Your feedback will help determine if this needs to change. If you have had surgery, particularly a cosmetic surgical procedure, please share your experiences in this anonymous survey.

This is a partnership project with the Health Issues Centre Victoria and the Health Ministers Meeting.