Category: Uncategorized

Stepping forward with confidence into 2023

Posted on January 12, 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

 

2022 Response to WA Abortion Reform Consultation

Posted on December 14, 2022

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.

 

The time is now!

Posted on October 24, 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/