Category: Blog

Rapid review – Federal budget health announcements

By Clare Mullen, Executive Director, Health Consumers’ Council

Just by chance, I happen to be in Canberra the week before the Federal budget, and the week I take up my new role at HCC – an interesting time to be in the nation’s capital. I had time to read the transcript of Minister Mark Butler’s speech and Q&A session at the Press Club on 2 May. Below are some things I’m taking away.

The TL;DR* version? Different roles for nurses, midwives and pharmacists are coming; new approach to Medicare funding for primary care – including My Medicare coming; restrictions on vaping. No mention of the need for much more consumer involvement in these reforms.

  • we’ll see the introduction of My Medicare
    • there are no details yet, but it says patients will be able to register on the platform, with their preferred clinician
    • practices/GPs can also register
    • the aim is to enable more on-going care, less “transactional” care
    • over time, it will enable easier identification of patients who are going to hospitals upwards of 10 times a year and allow better targetting of resources to enable them to receive better care in primary or community care
  • we’ll see funding for longer telehealth consultations
  • there will be changes to workforce roles, with an emphasis on a more multidisciplinary approach to care freeing doctors up to provide the care that only they can provide
    • greater role for nurses and midwives – including a Review of Scope of Practice
    • greater role for pharmacists/pharmacies – including
      • free vaccines under the national Immunisation Program
      • access to opioid dependency treatment
  • The Minister describes these changes as “persistent evolution, not overnight revolution” and reiterated several times how these changes will take time.
  • He noted that there have been modest increase in spending on Medicare Benefits Schedule and the Pharmaceuticals Benefits Scheme – but a significant increase in hospital spending.

The Minister also announced well-publicised changes to vaping accessibility, including banning non-prescription vapes, and an increase in tax on cigarettes. He also noted the need to increase the number of doctors who can prescribe vapes to support smoking cessation. Funding from the tax increases will go towards programs to reduce smoking/vaping dependency. He commented that “our focus is not on the people buying, our focus is on the people selling”. He also said there are more announcements to come in next week’s budget.

#WhereAreTheConsumers

Many of these reforms sound very positive for consumers. Consumers have long been calling for more time with their GP, more affordable/free access to primary care, and are ready to access care from other members of the primary care clinical team.

It’s clear that the design and implementation of these reforms are going to need a high level of involvement from a diverse range of consumers, carers and community members.

Local consumers influencing national reforms

Being in Canberra, I also took the opportunity to meet with local and national consumer leaders: Darlene Cox and her team at Health Care Consumers Association, ACT’s equivalent of HCC, and Elizabeth Deveny at Consumers Health Forum, the national consumer peak body. It was great to discuss our shared interests and challenges.

What is clear is that there is much more opportunity for WA consumers to be more involved in national health reform discussions. Elizabeth commented that there are often WA nominations for national working groups – but we can always do with more. We also discussed the challenges of very limited funding for consumer organisations, and the importance of continuing to make the case for more investment in building capacity and diversity in consumer leadership right across Australia.

I know that there are currently relatively limited opportunities for local consumer involvement in primary care – both through the Primary Health Networks (managed in WA by the WA Primary Health Alliance) and within local practices.

I will be writing to Mark Butler to highlight this and enquire about how this might be addressed in a way that ensures grassroots community perspectives are well understood as these reforms take shape.

Join us

If you’re interested in how consumers, carers and community members can shape health and healthcare, you can join Health Consumers’ Council WA and become part of a social movement in health. It’s free to join and you’ll receive invitations and updates about our work and other items of interest.

A white canvas with multi-coloured splashes of paint. The word together is across the canvas in capital letters.

[* TL;DR is internet shorthand for “Too Long; Didn’t Read”]

Executive Director Announcement

[Image: L-R Mallika Macleod, HCC Chair and Clare Mullen, HCC Executive Director]

 

After carrying out an external recruitment process the Health Consumers’ Council (HCC) WA Management Committee is pleased to announce the appointment of a new Executive Director – Clare Mullen.

Clare has worked with Health Consumers’ Council since 2018, most recently in the role of Deputy Director. She has extensive understanding of health and social care systems with over 20 years’ experience in the UK and Australia. In the last 10 years she has held leadership roles in the WA Department of Health, the WA Primary Health Alliance and Health Consumers’ Council, giving her a deep understanding both of the complex issues facing our health and social care systems, as well as the lived experience of diverse consumers, carers and community members as they navigate these systems.

She is passionate and skilled at seeking innovative solutions to these challenges by bringing people who use these services together with people who work in these services in engaging ways that enable the strengths of each of these groups to be applied to the issue at hand. She also has considerable experience in advocating for consumer, carer, lived experience and community perspectives in a range of settings.

The Management Committee is looking forward to working with Clare in her new role.

The Management Committee would also like to take this opportunity to thank outgoing Interim Executive Director Rebecca Smith for leading HCC into 2023, and her willingness and ability to step in and support the team during the recruitment process. Rebecca will continue as a member of the HCC Leadership Team on an interim basis to support the transition.

Congratulations Clare!

Encouraging a Strong WA Consumer Voice in Medicare Taskforce Report

 

There is a lot of reform taking place at the moment in the area of primary health care and how this interacts with hospital and community care.

As the needs of Western Australian communities may differ from those of other regions, it is essential that the voice of WA is heard in this reform work. There are several opportunities for WA consumers to participate in this important work, including watching a replay of a recent community briefing by the Consumers Health Forum (CHF) on the Medicare Taskforce report or registering for the upcoming session to inform their feedback on the report, which will be held on March 22.

Background

In early February 2023, the Federal Government released the “Strengthening Medicare Taskforce” report – Elizabeth Deveny, CEO of the national Consumers Health Forum (CHF) was the consumer voice at that table. Learne Durrington, CEO of the WA Primary Health Alliance was also at the table, representing Primary Health Networks.

Last week, 3 February, CHF held a community briefing session on the report. You can watch the recording of that webinar here.

CHF will also be holding another session on 22 March (2:30 pm AEDT) to inform their input to the next stage of this process. If this is an area of interest to you, we encourage you to register here: a pre budget follow up webinar to talk about the key messages for consumers that CHF want to promote to decision-makers and the wider community.

Upcoming HCC consumer representative networking session

On 31 March (10 am – 12 pm AWST), HCC will be hosting the first of our consumer representative networking sessions for 2023. We’re delighted to advise you that Elizabeth Deveny from Consumers Health Forum in Canberra will be joining us virtually at that session so we’ll have a chance to explore the implications for WA with her directly. Register here.

~ Clare Mullen, Deputy Director, HCC

Stepping forward with confidence into 2023

Suzanna Robertson, executivedirector of Health Consumers' Council, head and shoulders pictured to the left of a branded banner with logo and tagline that reads "Health Consumers' Council, working together to address barriers in healthcare".

 

HCC Executive Director – 2022 Annual General Meeting (AGM) Address

delivered 6 December 2022

It’s a privilege to have joined HCC in April this year (2022).  HCC is an organisation with a strong voice built on experience, knowledge, and a proven commitment to really listening.

We are expert at creating space and conditions for people to be share experience and perspectives.  We identify and act on opportunities to emphasise what we hear and learn, to influence decisions by government and health services, and create conditions for positive change.

We gained 14 new members in 2021/22, growing the HCC community of people involved in creating positive change to nearly 250, with more individuals and organisations joining each month.

In the coming year, we want to do more of what we know makes a difference to people’s lives. However, we operate in an environment where government funding to the community services sector has not kept up with wages growth and cost of operation increases.  This is a hard ask. As such, we are making concerted efforts to grow and diversify our funding sources:

  • Providing consumer engagement expertise through projects and consultancy paid on a for-service basis.
  • Application to government proposing funding for expanded advocacy to reach more people who have prover health outcomes – we’re hopeful but competing with many other challenges for a finite bucket of money.
  • Expanding our consulting to new markets like aged care and disability services that are seeking to engage with consumers effectively and authentically.
  • Continuing to refine the information we collect and report to demonstrate our value and impact, which is challenging when our value is so clearly linked to relationships more than transactions and therefore much harder to measure and count. But we’re committed to keep trying.

When I started here, a statement in HCC’s strategic plan struck a chord – “learning as we go.”

Such simple words, yet so frequently they strike fear into the hearts of policymakers and funders.  So, then nothing is implemented until it’s fully proven, and with governance frameworks and project schedules clearly aligned and articulated.  Creativity, innovation, and consumer voice stifled by bureaucratic process, leading to “faux design” rather than co- design.

I feel like there’s a change afoot. The commitments of key reforms like SHR, of which my predecessor Pip Brennan was a driving force of consumer voice, recognise that what’s gone before isn’t working and it’s time for something new.

Doing new and different things requires a commitment to trying, learning, refining, doing, and learning, trying, and doing some more.  At HCC we are small enough to be agile, responsive, and innovative while robust enough to be credible, reliable, and respected.  These are the qualities that will see HCC step forward with confidence into 2023.

 

 

 

Suzanna Robertson | Executive Director, December 2022

 

Sustainable Health Review – focus on delivery

In November 2022, Health Consumers’ Council staff attended a WA Health Leadership breakfast with the Minister for Health and Mental Health, Amber-Jade Sanderson, for an update on the Sustainable Health Review (SHR).

After a slow start to implementation, and the disruptions caused by COVID, it was great to hear the Minister reiterate the Government’s commitment to the SHR and its implementation. The Minister was firm in her view that the SHR is about:

  • an equitable patient-centred system
  • a health system, not a hospital system
  • giving a voice to consumers.

She reminded attendees that the SHR outlined the need for courage, collaboration and systems-thinking.

We heard that while WA’s COVID response demonstrated the robustness of the WA health system, it also highlighted its fragility in some areas. The Minister was clear that as we now live with COVID, it’s not about snapping back to how things were before – but that it’s time to make sure that the health system’s actions match community needs.

She outlined that a key priority is addressing emergency access to care – which is a focus for a Ministerial Task Force that was established earlier this year.

Tim Marney, Chief Economist at Nous Consulting, and Chair of the Independent Oversight Committee (IOC) for the SHR then spoke about how the focus for the IOC is very much on delivery. There will be a new focus on implementation.

As part of that, it has been agreed to provide focused support to a smaller number of recommendations (there are 30 in total in the SHR) to enable implementation to be accelerated in these critical areas:

  • Recommendation 11: Improve timely access to outpatient services through:
    a) Moving routine, non-urgent and less complex specialist outpatient services out of hospital settings in partnership with primary care.
    b) Requiring all metropolitan Health Service Providers to progressively provide telehealth consultations for 65 per cent of outpatient services for country patients by July 2022.
  • Recommendation 13: Implement models of care in the community for groups of people with complex conditions who are frequent presenters to hospital.
  • Recommendation 17: Implement a new funding and commissioning model for the WA health system from July 2021 focused on quality and value for the patient and community, supporting new models of care and joint commissioning
  • Recommendation 22: Invest in a phased 10-year digitisation of theWA health system to empower citizens withgreater health information, to enable access
    to innovative, safe and efficient services; and
    to improve, promote and protect the health of Western Australians.
  • Recommendation 23: Build a systemwide culture of courage, innovation
    and accountability that builds on the existing
    pride, compassion and professionalism of staff to support collaboration for change
  • 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

Tim was clear to point out that this did not signal that the other recommendations were less important and reiterated that work on these would continue.

He also highlighted that a number of the recommendations including Recommendation 3 with a focus on health equity and Recommendation 4 with a focus on citizen and community partnership – and for which Suzanna Robertson, HCC’s Executive Director is a co-lead – should be seen as underpinning all the other recommendations.

Health Consumers’ Council continue to advocate for targeted consumer and lived experience partnership and involvement in all the SHR work and look forward to learning more about how this will work for the six prioritised recommendations.

(By Clare Mullen, Deputy Director, Health Consumers’ Council)

Consumer participation payment – HCC process change

Starting in 2023, Health Consumers’ Council will be changing our process when we ask for a consumer’s information to make a consumer participation payment. This change is to ensure that appropriate records are being kept and is due to Australian rule changes.

We will require people to complete a “Statement by supplier” form (for the Australian Tax Office).  The form may be necessary to receive payment from us without an ABN. If you receive this form from us, we will detail why it is required – please reach out to us if you need this further clarified before completing the form. Additionally, if you require any assistance in completing the form we have provided, please do not hesitate to contact us for assistance.  

Kieran,
Health Consumers’ Council, WA

Supermarkets like casinos?

(by Clare Mullen, 10/11/22)

I’m really enjoying Magda Szubanski’s ABC series – Australia’s Big Health Check. She’s looking at how easy – or not – it is to be healthy in Australia.

She highlights that poor nutrition and obesity are taking over from tobacco and smoking as the leading cause of ill health and death in Australia. One of the doctors on the show comments that when it comes to our health

genes are what load the gun, but then it’s our lifestyle that pulls the trigger… the important thing here is, that you can do something about this…

What Magda goes on to show, is how determined we have to be in order to do what we can to avoid harmful foods when we’re out shopping! Dr Sandro Demaio, Chief Executive of VicHealth comments that

With the lack of natural light and no clocks, supermarkets are more like casinos than traditional markets

And shares that the prime “real estate” of the ends of aisles are sold to food companies by the supermarkets. As one of the community members in the show says

When you’re going in for a quick shop, it’s hard not to buy that end of aisle stuff…

And of course, that “end of aisle stuff” is often the low nutrition, high calorie, high sugar option.

But as Magda shows in the program – there are people fighting back. And we think WA health consumers, carers and community members can be involved in that work too.

Come along to our events this month and be part of the discussion – share your thoughts on how we can all play a part in a healthier WA!

A picture of Magda Szubanski with a blue rubber glove on one hand and a blue bandage on her forehead. The wording says Let's Fight For a Healthier Us

Rapid review of the Independent Governance Review with a consumer/lived experience/community lens 

The report of the Independent Governance Review Panel has been noted by Cabinet and was presented to Parliament on 25 October 2022. You can read the report and the public submissions online at https://ww2.health.wa.gov.au/About-us/Department-of-Health/Independent-Governance-Review-of-the-Health-Services-Act-2016

At Health Consumers’ Council we were proactive at promoting this Review as an opportunity to address some of the high-level issues experienced by consumers, people with lived experience, carers and family members. 

The report is the result of months of detailed work and will take us some time to go through in detail. We understand there will be much work required for the proposals contained in the report to be actioned. We’re sharing our rapid reflections on the report at this stage in the spirit of collaboration and shared purpose. 

Overview 

From HCC’s initial reading, we see that there is much to be welcomed in the report – and some things to question further before they progress to implementation. 

 Great to see proposed: 

  • Act to be changed to require involvement of consumers on Health Service Provider (HSP) Boards, including Aboriginal people and people with mental health experience 
  • The Minister for Health is to develop a long-term health strategy 
  • A proposal that governance should evolve so that collaboration, information sharing and networking are the norm 
  • Consumers should be recognised as partners in systemwide health strategies and development of local services 
  • Establishment of collective leadership forums (consumers involved in the “advisory” forum) 
  • That the Minister for Health will develop a legislated code for consumer engagement and partnership 
  • A stronger focus on Aboriginal health and the inclusion of the Aboriginal Health Council of WA in the collaborative leadership structures of the system 
  • Refreshed role for Clinical Senate and clinical networks 
  • Creation of three commissioning authorities (north, south and east) at arms-length from HSPs – in collaboration with other commissioning bodies, including Commonwealth, National Disability Insurance Agency and local aged care authorities 
  • All data to be shared openly and transparently across DoH and HSPs unless there is a reason not to do so 
  • Public reporting of performance dashboards but… 
  • More transparent public reporting was also proposed in the Sustainable Health Review but so far hasn’t been fully implemented from that program of work 
  • Under workforce proposals it includes the development of patient-oriented roles to work alongside clinical roles and support consumer engagement and system navigation 
  • The inclusion of consumers and Aboriginal health services in the design of emergency responses including any rapid design and mobilisation of new service models. 

 More information needed/questions to be asked 

  • It is proposed that the Department of Health (DoH) provide more clear guardrails to HSPs about where HSPs do and don’t have local discretion in regard to systemwide policies. We hope this won’t mean that policy officers in DoH – many of whom have no or little experience of working in frontline clinical settings – will develop policy that HSPs will then be required to implement. 
  • Change in role for the Mental Health Commission – from commissioning to oversight. 
  • While the report signals a shift in culture from competitive to collaborative, it is silent on the mechanisms for this to be achieved. As this isn’t something that will “just happen”, we believe it needs some focused attention and resources on how this shift will occur. 
  • The report refers to building the DoH’s capability to develop major health projects – we’d like to know that this will include senior consumer involvement. We see value in a consumer lens being applied before anything progresses to procurement and being locked into contracts. 
  • It refers to an ICT Executive Board and a Digital Health Reference Group – it refers to a range of stakeholders, but no mention of consumers yet. We’d advocate for someone with a consumer lens in these discussions, noting that they would also have to have strong technical understanding. 
  • On p23, it’s noted that more training is needed on how to engage with consumers. We note that this was also a recommendation (Rec 12) for Boards in the Hugo Mascie Taylor report into the safety and quality of the system published in July 2017, but we’re not aware of any such training having taken place. What will be different to ensure these recommendations are fully progressed, and publicly reported on? 

 Opportunity missed? 

  • The report does not seem to require that DoH involve consumers/carers at the highest level of DoH governance. This is very disappointing and at odds with references elsewhere to the importance of consumer/carer/community involvement in systemwide strategic planning and discussions. For example, the MHC has had consumers and carers involved at their highest levels of governance for some time – including sitting alongside Health Service Provider Chief Executives at the Mental Health Executive Committee – but there is no sign of this being suggested for DoH. 

We will continue to review this document in detail and will be holding a rapid consumer/carer/lived experience leader briefing session on the report on Tuesday 1 November, 12pm – 1.30pm. You can register to attend this session at https://www.eventbrite.com.au/e/independent-governance-review-report-hcc-info-session-tickets-451041014817  

We will also reach out to the Review team to see if they will be organising any targeted briefing sessions. 

Clare Mullen, 31 October 2022 

Consumer/Lived Experience Conference report – International Congress on Obesity 2022

Report by Clare Mullen, Health Consumers’ Council WA

In October 2022, over 1,000 people were in Melbourne to participate in the International Congress on Obesity.

I had the opportunity to attend as a member of the Weight Issues Network (WIN) as a Lived Experience speaker, as well as through my roles with Health Consumers’ Council WA, The WELL Collaborative and the Obesity Collective. My attendance was part funded by WIN (thanks to support from the ICO organisers) and part by HCC, through my work on the WELL Collaborative, that’s funded by WAPHA and the Department of Health.

There were three other people from WIN who attended as Lived Experience speakers. Dr Nic Kormas, also on the WIN Board as a clinician, was attending too.

There were three main streams of content:

  • Basic research[1]
  • Clinical – looking at treatment and care
  • Public health – looking primarily at prevention options

There were also a number of cross-cutting sessions – where people with perspectives from each of these streams all presented together. Apparently this is not very common – which I found surprising.

 

Lived Experience/consumer speakers were involved in five of the sessions, and we also ran a workshop on “So you want to engage people with lived experience of obesity?” which was attended by about 50 people. We all received positive feedback about our contributions to the discussions, and I hope we’ve paved the way for Lived Experience speakers to be involved in more of the sessions in future.

We also had a table in the exhibition hall and had people signing up to the WIN mailing list, as well as taking away a practical guide to creating weight inclusive spaces in clinical settings. (I have some of these in hard copy, so let me know if you’d like one to take along to any healthcare setting you attend regularly!)

Takeaways and personal reflections

  • If carrying extra weight is either causing you health concerns, or you’re concerned about your increased risk of future health concerns, treatments are available. These include a few different types of medications as well as surgery – and options are increasing. These clinical interventions may complement individual behaviour which could include changes to nutrition, physical activity, sleep, stress and social connections.
  • Extra weight can be a risk factor for some people for some health issues. To work out if carrying extra weight has health implications for you it’s important to speak with an informed health professional who has contemporary and detailed knowledge on obesity, overweight and health – and can help you assess your personal risk, in the context of your life, so you can work out the best treatment and care options together.
  • Currently, it’s really hard to find informed health professionals who have contemporary and detailed knowledge on obesity, overweight and health. Health Consumers’ Council is working with the WA Primary Health Alliance and the WA Department of Health to provide consumers with access to a list of health professionals who have undergone additional training on this topic as a starting point – watch this space!
  • Adolescence may be a critical time to offer person- and family-centred interventions – changes made at this point can be life-changing and long-lasting.
  • There is a critical shortage of treatment services for obesity – particularly for adolescents. (I personally find this borderline unethical.)
  • I think there needs to be a lot more discussion and review about bariatric surgery. I learned that currently, it’s believed to be difficult to work out which patients will get positive outcomes from the treatment – with outcomes varying significantly. I was also reminded that one of the possible benefits of this surgery is extended life expectancy – and that this effect may still be likely, even if someone regains weight after the surgery. (Overall, I think we need to upskill a few more consumers to learn about the technical details of this treatment and cast an informed consumer lens over the evidence and be part of the debate. I certainly don’t feel informed enough to go up against clinical experts on this subject.)
  • From a value-based healthcare point of view, I believe there could be some consideration given to funding models for bariatric surgery – for example, I wonder whether surgeons would be more invested in helping people to work out if surgery was going to be right for them, if the surgeon’s payment was impacted by the outcomes of the surgery (as assessed against patient-reported outcome measures agreed upfront). In fact, this could be applied to lots of types of treatment…
  • Weight stigma has a huge role to play in muddying the waters on healthcare in this area. I’m left wondering, how can we get to a place where everyone can distinguish between decisions we’re making based on desires we might have to look a certain way (influenced by societal pressures) versus decisions we’re making that could improve our health – and so make a really informed decision about what actions to take?
  • I think we also need more deliberative discussions as a community about how we navigate the various aims of a) dismantling the obesogenic environment[2] we live in, b) creating the conditions where people are able to more easily do things that have a positive impact on health (and broaden this beyond nutrition and physical activity), and c) ensuring personalised care and treatment is available to people whose health is impacted by carrying extra weight. Unfortunately, the public health narrative still too often contributes to weight stigma.

Clare Mullen, October 2022

p.s. as well as the serious work, it was great to meet and connect in person with the people involved in this work that I’ve been meeting online for the last couple of years.

[1] Basic research, also called pure research or fundamental research, is a type of scientific research with the aim of improving scientific theories for better understanding and prediction of natural or other phenomena, https://en.wikipedia.org/wiki/Basic_research#cite_ref-Research2014avg_1-0

[2] “The term ‘obesogenic environment’ is used to describe an environment that promotes obesity”, https://www.aihw.gov.au/reports/overweight-obesity/overweight-and-obesity/contents/causes-of-overweight-and-obesity

The time is now!

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/