Category: Blog

We recently farewelled one of the most influential people in Australia’s consumer health movement.

Kate Moore was known to many in WA as the Executive Director of the national peak, Consumers Health Forum (CHF), from 1991 until her retirement in 1999.

Michele Kosky, who was the first Executive Director of Health Consumers’ Council, said Kate was a singular woman of integrity and strong values.

“Kate’s leadership at CHF really set the landscape for the health consumer movement over many years. She was generous with her time, strategic in her work, trustworthy and a great believer in the strength of coalitions and collaborations.”

“In my experience with Kate (jokingly called Mission Control in the West), our tiny organisation between the Nullarbor and the Indian Ocean in the 1990s, she always had time to offer quiet advice and sound reasoning…and a good laugh.”

Former HCC Chair Anne McKenzie wrote that Kate “was a softly spoken powerhouse” who understood the complexities of health financing and the relationships between the Commonwealth and the states and territories.

Throughout her career Kate held a range of roles at local and national levels and was a strong advocate for social justice, addressing inequity and putting consumers at the centre of health policy.

Mitch Messer, one of HCC’s first Board Members, said Kate “was a champion of consumer involvement in health”. One of her many roles was as a member, and later Chair, of the ACT’s Health Care Consumers Association, who said “She brought a sophistication to advocacy with CHF and HCCA and was able to use her knowledge and connections to pave the way for consumer perspectives. Kate’s view was that not only do consumers bring an important perspective to policy and decision-making, they are also in a position to put forward an alternate view while Government maintains more neutral ground.”

Kate was guided by her personal values and was a pioneer in the idea of values focused leadership. She was passionately committed to consumer participation in health care and was a mentor and guide to many consumers with a light touch and a ready smile.

At HCC, we feel proud to be able to play a part in this work in WA.

We invite you to read more about Kate’s lasting legacy here and here. Rest in Peace Kate.

By Nadeen-Laljee Curran, mother through surrogacy in the USA

Recently the WA government accepted a series of recommendations from its Ministerial Expert Panel (MEP) on Assisted Reproductive Technology (ART) and Surrogacy laws. To say we at the Health Consumers’ Council were thrilled would be an understatement. It’s been an emotional few weeks for me, as my daughter was born via surrogacy and these changes personally affect me and friends and acquaintances in my community.

Speaking more broadly though, we are delighted to see the power of advocacy in action and common-sense prevailing. This review proposes to repeal the Human Reproductive Technology Act (which is 32 years old) and the Surrogacy Act (which is15 years old). This is necessary in our view as reproductive technology is a space which continues to be steeped in scientific advancement and innovation, and in today’s society has a much broader and more inclusive definition of family than was the accepted societal definition in the decades when these laws were created. We are an organisation with the value of equity at its core and we recognise that to date WA laws have been discriminatory and, in some areas, simply not fit for purpose, nor in line with the rest of the country.

In summary, the recommendations address issues around equity of access to reproductive technology and modernising and streamlining processes and procedures in this space.  There are 46 recommendations in total and the report is complex so I have made a summary which you can read here and below is our overview and thoughts on the “big-ticket” items.

Access for all

I will start with this as this has been (arguably) the biggest issue to date. Our current law prohibits gay men in same sex partnerships, single men, transgender, non-binary and intersex people from accessing surrogacy – and in this regard is in direct violation of antidiscrimination law. To date WA’s ban has forced many people overseas to access surrogacy as the only option to biological parenthood. Going overseas, as I know firsthand, is fraught with huge challenges and financial burden, and in some instances exposes people desperate to become parents to significant legal, health, psychological, and financial risk.

The new law will make it so that people accessing Assisted Reproductive Technology (ART) must not be discriminated against on grounds which include, but are not limited to, sexual orientation, relationship status, gender identity, disability, race or religion. The proposed legislation will also use gender inclusive language. Finally!

The MEP report recommends that the change be implemented as soon as possible.

Abolition of the Reproductive Technology Council (RTC) and creation of a new regulatory structure 

This is the biggest change in the way the sector will be regulated. Abolition of the RTC is something that has been discussed for a while. The new law will mean regulatory body approval will not be required for surrogacy (and other reproductive procedures) instead putting the onus on ART providers.

Some of other the positive changes include:

• No need for surrogacy arrangements to be approved. The decision-making will lie with the clinicians.
• Decisions around storage of gametes and embryos to be made between patients and licensed ART providers (without regulatory body approval in the main).
• Decisions around import and export of gametes and embryos to be made between patients and licensed ART providers (without regulatory body approval in the main).

A new advisory/review board will be established for the purpose of decision making on contentious or innovative ART procedures. We are really pleased to read that the proposed board composition will include a consumer. However, we note that the recommendation is for either a person who has used ART or is born of ART, and note that these are quite different perspectives. Ideally there would be two consumers who can work together and support one another; we will do our best to advocate further in this space to encourage the creation of a second consumer role or a deputy position.

Removal of a lot of the surrogacy red tape

Finding a surrogate in WA, and then a lengthy process with huge amounts of red tape, is cited by the report as being a reason that people go overseas – even if they are cis-gender, heterosexual, infertile people who would qualify for surrogacy in WA.

In the context of the low numbers of WA surrogacy, the MEP report notes that it is very difficult to find a surrogate in WA. Advertising is actually legal in WA (so long as it is not commercial), where it isn’t in other states. However, the review notes that knowledge of this fact is limited and that ART providers have not exercised opportunities to connect intended parents and surrogates (in our view this has been due to fear of breaching complex laws and suffering penalties). The report emphasises that ART providers can and should advertise and broker for altruistic surrogacy. The report also notes there is a strong case for community education and public awareness campaigns in this space.

The new legislation will not require regulatory body approvals for surrogacy as mentioned above, has an expanded allowance for reimbursement of surrogacy expenses and allows registered and experienced ART counsellors work with surrogacy cases (rather than just RTC approved ones). It also drops the requirement for the surrogate to have previously given birth to a live child.

Supporting donor conceived people to able to access information about their genetic heritage 

The proposed legislation will make provision for a central donor register and access for donor conceived people to identifying information about their donor, regardless of when they were born.  This is in line with an international shift towards recognising the interests of donor conceived people and the potential harms of being unaware of your donor conception until adulthood. HCC very much supports this.

The MEP report recommends an addendum to birth certificates noting details of donor conception (including surrogacy) and that donor conceived people be notified at 16 years of age that more information is held about them at the Office of Births Deaths and Marriages.

It should be noted that gestational surrogacy (surrogacy where there is no genetic connection between surrogate and child) is to be included in having this addendum, and has not been separated out due to no genetic linkage.

Legalising reciprocal IVF

Reciprocal IVF is where one person in a same-sex partnership contributes their egg and the other person is the carrier of the baby. This will be allowed in WA under the new law. To date, same sex (female) couples have had to choose one person to be both the biological and birth mother or go overseas to access reciprocal IVF.

Creating a route to legal parentage for those born via overseas surrogacy

This will allow the 400 plus children born overseas to WA parents since 2008 to finally have their parents recognised as their parents.

Yes, you understand correctly, the current law in WA does not recognise my biological daughter as my daughter or my husband, her biological father, as her legal father. The reason being, she was born via overseas surrogacy.

This has caused me significant psychological distress but no issues in practice, as she has citizenship by decent and is on my Medicare card, but in theory I could have difficulties with government authorities such as schools and hospitals and with inheritance rights. I have always argued this is a human rights issue as it is effectively creating an orphan (on paper). Our surrogate signed a surrogacy agreement to say she wanted to birth a child only and had no desire to parent, and then went to a Californian Court of Law to renounce any parental responsibility so she is not my daughter’s parent.   If we too are not her parents, then who is?!

I wish my daughter’s American birth certificate, which states my husband and I as her parents, was accepted here but in lieu of that I cannot wait to legalise my own flesh and blood as my child and just hope the legal process doesn’t cost me too much more stress or money. I am not sure how this will work yet but I will be looking into it so I will let you know.

Other matters of inequity which were out of scope of the review but mentioned in this report include: support for conversations being had with the commonwealth to expand the Medicare Benefits Schedule to include IVF for surrogacy; exploring options for public IVF treatment; provision for some delegated practitioners to offer (limited) procedures in regional WA; and a recommendation that the Department of Health explore options to improve access to ART for Aboriginal people.

We are really excited about these upcoming changes and hope they will be enacted soon. We will keep you updated, so watch this space!

By Clare Mullen

I was asked to contribute to the Power to Persuade platform – an independent platform for global discussion about social policy based in Australia.

I wrote about a subject close to my heart – how do we change the nature of the relationship between the people who use health services, and the people who work in them?

https://www.powertopersuade.org.au/blog/its-time-for-community-power

I’d love to know what you think? Have a read and let me know what you think, either via LinkedIn or by email at clare.mullen@hconc.org.au

Health Consumers’ Council is encouraged by the reforms announced in the Federal Budget 2023-24 that will give consumers better access to affordable primary care (GP) services. Some of the highlights of the budget include:

• Medicare funding and reform to improve access to primary care:
  • Increased incentives for GPs to offer bulk-billing for patients under 16 years old and concession card holders
  • Funding to better engage health consumers in primary care reform, mental health services, and multicultural healthcare
  • Improved investment in preventative healthcare for Aboriginal people
  • New urgent care clinics to take the pressure off emergency departments
• Savings on around 300 medications, with consumers able to buy two months’ supply at a time
• MyMedicare – a new voluntary scheme to create a stronger relationship between patients and their primary care teams allowing for better continuity of care and easier access to telehealth consultations
• Trialling integrated service and joint commissioning across the primary health system, disability care, aged care, First Nations health, and veterans’ care
• Funding allocated to commence planning for LGBTQIA+ health and form an LGBTQIA Health Advisory Group

However, HCC believes more detail is needed about the implementation and application of the proposed MyMedicare, as there may be an equity issue for consumers who could benefit from the associated services, such as longer telehealth sessions, but may experience digital exclusion. There is a concern that this may create a two-tier system within Medicare, which would disadvantage some consumers.

There were also some notable funding gaps related to allied services and dental health, a disappointing lack of focus on climate change and its health impacts, a lack of services related to COVID outside of vaccines and diagnosis, and insufficient focus on preventative health measures.

What we do know is that there’s going to be some big changes in the coming months and years with all of the reforms happening in health and social care, and we look forward to ensuring the consumer voice is at the centre of health policy and service delivery.

If you want to know more about the Budget 2023-24, or you have questions for the Federal Minister for Health and Aged Care, you can join Consumers Health Forum of Australia for an interactive online webinar, Q&A style, on Friday 9 June, 8:30-9:30am WST.

Find out more, and register, here.

National Health Reform Agreement

In other health reform news, the Federal Government has commissioned an independent review of The National Health Reform Agreement, an agreement between between the Commonwealth government and the state government on a range of health issues.

Health Consumers’ Council will be submitting a response to the review, you can read more about it here.

By Clare Mullen, Executive Director

The National Health Reform Agreement (NHRA) is an agreement between the Commonwealth government and the state government on a range of health issues.

• National Health Reform Agreement https://www.health.gov.au/our-work/2020-25-national-health-reform-agreement-nhra
• This is the information about the review https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/review-of-national-hospital-funding-agreement

The Federal Government has commissioned an independent review of this Agreement as it is the mid-way point of the Agreement’s term. The review team is due to report in August 2023.

I had the chance to speak with the Review team when they were in Perth this week.

Below are some of the points we plan to include in Health Consumers’ Council’s submission which we will submit by the end of June 2023. If you have further points you’d like to see included in that response, please email them to Jasmina Brankovich, HCC’s Systemic Advocacy and Policy Lead, jasmina.brankovich@hconc.org.au

• A key focus of the Agreement relates to how hospitals are funded – this is called Activity Based Funding (ABF) and it means that hospitals are funded based on the volume of services they provide (rather than receiving a block of funding as was the case previously). From our discussions with people across health, it seems this has led to some activities which would benefit consumers being understood by hospitals as not to be included – i.e. activities which might lead to services being provided in primary care/community care settings rather than in a hospital setting
• Funding based on fee for service inevitably leads to health services need to drive activity – when less activity in the hospital, and more in primary care would be best for the consumer
  • We note that NSW Health opted to initiate collaborative commissioning, using state funds to commission primary care services so as to reduce demand on hospital services – we’re not aware that this has been replicated in other states yet, including WA
• The role of “system manager” as it’s currently recognised – i.e. only of public hospitals – limits the value of a system manager role.
  • Given that managing hospitals relies heavily on the provision and functioning of primary/community care services – often commissioned and/or funded by the Commonwealth, there may be an advantage in exploring the role of “system manager” being expanded to all publicly funded health services in the state – including those in primary care.
  • Consumer input into commissioning and funding decisions should be mandated for all publicly funded health services – both at a hospital and primary care level. This may require investment in building the capacity and structures to support informed consumer input to these decisions.
• In response to the goals of the NHRA:
  • deliver safe, high-quality care in the right place at the right time
    • there is significant opportunity to improve funding flows across hospital/primary and community services – all too often consumer reps hear, that’s a function of “the other part of the system”.
  • prioritise prevention, and help people manage their health across their lifetime
    • there is little evidence that this goal is being achieved through any of the activities in the current agreement
  • drive best-practice and performance using data and research
    • this is difficult for consumers to comment on given the limited transparency of data about best practice and performance that is in the public domain
  • improve efficiency and ensure financial sustainability
    • the geographic and demographic characteristics of WA mean that “efficiency” and “financial sustainability” comparisons with other states is unlikely to be an effective way of measuring success for the WA community
    • We advocate for a recognition of the inherent “inefficiencies” in a health system that is delivering care across a vast geographic area, with very limited Federally-funded primary care provision in the regions – a national efficient price is unlikely to be sufficient to deliver safe high quality care in many parts of WA

With regards to the 6 reforms outlined in Schedule C of the NHRA:

• empowering people through health literacy – person-centred health information and support will empower people to manage their own health well and engage effectively with health services
  • from our position in the system, there is very limited evidence of any activity happening in this area
  • we would like to see a stronger role for community-led initiatives – including bi-cultural workers – to shift the dial on health literacy
• prevention and wellbeing – to reduce the burden of long-term chronic conditions and improve people’s quality of life
  • we note the publication of both state and national strategies relating to preventive health and obesity prevention, but see limited evidence of any investment in the implementation of these strategies at any level
  • we believe grassroots investment in building and maintain social capital is critical to this priority
• paying for value and outcomes – enabling new and flexible ways for governments to pay for health services
  • we believe there’s an opportunity for more consumer involvement in discussions to determine the framework for paying for value and outcomes
• joint planning and funding at a local level – improving the way health services are planned and delivered at the local level
  • in WA, we have limited evidence of this happening in practice. We acknowledge the benefit of having the three WA Primary Health Networks (PHNs) managed by the same organisation – the WA Primary Health Alliance.
  • We note the fact that in WA, the geographical areas covered by our PHNs don’t match the geographical areas covered by WA’s Health Service Providers and the challenge this creates for joint funding and planning
    • (In the metro area we have Perth North PHN and Perth South PHN, but South Metro, North Metro and East Metro Health Services)
• enhanced health data – integrating data to support better health outcomes and save lives
  • we would advocate for more local involvement and upskilling of WA consumers to inform the collection, publication and use of health data for the WA community
• nationally cohesive health technology assessment – improving health technology decisions will deliver safe, effective and affordable care
  • we are looking into this to inform our response.

We will also be considering our position on how Patient Reported Outcome Measures (PROMS) and Patient Reported Experience Measures (PREMS) could be used to inform how funding flows to different parts of the health system in future.

Overall, we will be calling for more local involvement and control of public funds that are allocated for the benefit of the WA community. For example, regional commissioning groups that agree funding priorities, planned outcomes, and performance measurement frameworks – to include multiple and diverse consumer and carer leaders working alongside local health system staff and policy makers who are well-placed to make decisions affecting the WA community.

By Clare Mullen, Executive Director, Health Consumers’ Council WA

Last week I was in Canberra to take part in the Wild Health* Canberra Australian health leaders’ summit. Wild Health are a publishing company who publish online content for people in the health system.

I took away lots of reflections which I’ll be mulling over in the next few weeks – but a major one for me is that

It’s time for consumer leaders and advocates to become knowledgeable and vocal about interoperability.

According to this article from the UK King’s Fund, “interoperability is the technical term used to describe the flow of information – about decisions made and care that has been or is being provided – across care settings. Good interoperability facilitates the best care in the best place with decisions made using all available information.”

While I’m still developing my understanding of digital health (to get to the recommended 30% of literacy – see below), from what I can tell, the issue with interoperability and why we don’t have more of it, is not just a technical issue.

You can’t always get what you want – especially if you don’t ask for it

One of the speakers asked conference attendees how many of them had asked for interoperability when they were scoping a digital health project – and the number was low. It seems one of the main reasons it’s not being baked in to systems is because it’s not being asked for.

As we know, health consumers have been calling for more integrated care for years. And we have the most to gain from integrated care.

Interoperability of systems – so our information can flow to the right people at the right time in our health journey – is critical to integrated care.

It’s also critical to remember that the “data” flowing around the system is our information – both about us as individuals, but also about us as a community. It’s critical that systems are designed in a way that means we can access our own information, and that as a community our collective information is understood to be a community asset – able to be used to inform decisions about where and how we need care.

As consumer representatives, advocates and leaders it can be easy to disengage from discussions like this – because they can seem too technical. But the next wave of transformation in health is going to be digital and not only do we need to understand it, we need to be able to lead the discussions to ensure that community and consumer interests remain at the forefront of these discussions.

You can read more of the discussions at the Wild Health summits live blog from the event https://wildhealth.net.au/whats-happening-in-health-reform-join-our-live-blog/

Developing a digital mindset

I heard about this book on Brene Brown’s podcast. One of the main points they make is that we all need to get to a basic level of literacy to be able to be part of discussions in relation to “going digital”. Based on the fact that we can converse with people who speak another language once we’ve reached 30% of that new language’s vocabulary, they suggest we all need to get to 30% literacy in regards to “digital”.

And they take the reader through some of the basics that we need to understand to reach that level.

It’s an easy accessible read and one I’ll be coming back to again and again.

At HCC we’re looking into how we can develop some training content for consumer reps and leaders to help us reach this level of understanding, and develop our digital mindsets. Watch this space.

* Wild Health invited me to speak at this event and covered the costs of my flights and accommodation to enable me to participate.

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.

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