Category: HCCWA Blog

[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!

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

Link to a PDF copy of our response is here:

2022 Response to WA Abortion Reform Consultation

Re: Request for Submission and Sharing of the Abortion Reform Consultation Process

Health Consumers’ Council thanks you (Dr Robertson) for reaching out to us and requesting our engagement with this consultation on Abortion Legislation in WA. We agree that these laws are long overdue for revision and reform and we have shared the consultation with our networks.

The Health Consumers’ Council of WA unequivocally stands for the rights of all people to access free, decriminalised, safe, timely and compassionate abortion care as part of essential healthcare and support the removal of access to abortion from the Criminal Code.

Earlier in the year, we added our signature to the Australia position statement on the Roe v Wade decision in the US published by Children by Choice, and welcomed the WA Minister for Health speaking on reproductive rights and equitable access to abortion for women and people with uteruses across WA, and we have been welcoming of the safe access zone legislation.

We know that accessing free, high quality, comprehensive abortion care in WA is difficult for many people. Factors including someone’s suburb or town, finances, the availability of clear, accessible, and culturally appropriate health information, and the lack of public services 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 affirm everyone’s individual right to choose what is best for them. Access to abortion is not a moral or religious debate, it is a healthcare right that centers on choice, respect, and self-determination.

Health Consumers’ Council knows from our engagement with the WA community that all stated options in question 9 have been and continue to be barriers to accessing abortion, particularly for people who may be marginalised, who are young, who are Aboriginal, who are Culturally & Linguistically Diverse and who are part of the LGBTQIA+ community. We anticipate that even with the proposed amendments, there will continue to be barriers until more is done to address timely access to clinical assessments, medical practitioner’s conscientious objections, health literacy/accessibility of relevant, plain-language information, financial impact for anyone not able to access bulk-billed abortion services, rights around age & access, lack of service provision throughout the state and especially lack of remote/rural services. We also recognise and stand with current abortion providers who recognise the stated barriers for service provision as stated in question 12.

Health Consumers’ Council would also like to respond to and note some nuances around the remaining submission questions:

Question Thirteen – While we agree that the need for mandatory counselling should be removed for this essential healthcare service, we s also agree that every person should still be able to easily access timely, cost-effective counselling and support around abortion if they choose.

Questions Fourteen & Fifteen – In order to increase equitable access to safe abortion, we believe that, in the same way any other form of healthcare treatment or procedure is approved, only one medical practitioner should be needed for a person to access an abortion. We also believe that if a medical practitioner should conscientiously object, they should be required to refer on in a timely manner to someone confirmed to affirm abortion, with tight processes around this stated publicly. For example, a clear and publicly available procedure that people seeking abortion can easily access and follow confidently when advocating for their rights. We believe that abortion care is healthcare and as such, access to abortion is a healthcare right. Health practitioners should do everything in their power to advocate and uphold the choices of their patients wanting to access abortion, whether they agree morally or not.

Questions Sixteen & Seventeen – We support increasing the gestational age to 24 weeks, while also noting the nuances and community concern for issues like eugenics and Disabled People’s right to life. We believe that increases in gestational limits are much needed. Less than 1% of abortions occur at later pregnancy gestations, they are experienced people who face complex situations, and they need to have kind and compassionate care (MSI, 2022). As viability of a pre-term foetus is often debated, and no universal consensus has been reached, this can be an ethical consideration of many people in Australia. However, access to abortion is not equitable, and therefore extensions on gestational limits are vital to uphold the right to choose and access health care. If the pregnant person chooses an abortion at any stage, there should be no involvement from anyone besides the pregnant person and their healthcare provider/s, with appropriate consultations around specific, high-risk procedures. We strongly support the repeal of the Ministerial ‘Ethics’ Panel on abortion, and we advocate for clear processes to be implemented and publicly available for the proposed second medical practitioner consultation for late term abortion.

Question Eighteen – We believe that there should be no requirement for Ministerial approval for a health service to perform abortions, provided the health services are equipped to do so safely. Further, we believe that any suitably equipped health service receiving public funding should be required to provide timely, legal, high-quality, free, and safe access to abortions at any stage, for anyone living or residing in Western Australia. We also note that repealing the Ministerial involvement via approval and panels will hopefully increase the availability of free abortions and the prevalence of services providing this vital healthcare, and urge the WA Government to invest more into making abortion accessible in every way.

Health Consumers’ Council provide individual advocacy to consumers of healthcare across WA and will continue to advocate individually and systemically for equitable access to all healthcare, including access to timely, safe, free, and legal abortion, for everyone living in WA, especially those who have been marginalised. We will continue to advocate with community for improved access to information and access to reproductive rights, contraception, culturally competent care, and gender and sexuality affirming care.

The Health Consumers’ Council welcomes the opportunity to assist further in consulting with community and providing advice to policy makers to enable much needed change to abortion laws in WA.

We acknowledge Aboriginal and Torres Strait Islander peoples and communities as the Traditional Custodians of the land we work on, specifically the Wadjuk people of the Noongar nation, and pay our respects to Elders past, present, and emerging. We recognise that sovereignty was never ceded and commit to continuing advocacy for anti-racism in the health sector.

(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!

• In person morning tea – Friday 18 November – Mount Lawley – 9.30am – 11.30am
  • Register at https://www.eventbrite.com.au/e/456559691327
• Online sundowner discussion – Wednesday 23 November – via Zoom – 4.30pm – 6pm
  • Register at https://www.eventbrite.com.au/e/459894937137

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 

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.