Category: HCCWA Blog

I can’t quite believe that we are very much at the end of this calendar year period. As I reflect back on the year that was many highlights come to mind:

• Firstly, reflecting on internal changes at Health Consumers’ Council, we had a change in leadership which led to some other changes internally and how we’re organised. We’ve also seen an increase in the amount of requests we’re receiving for involving consumers in health policy and planning projects – which is great to see.
• This year we also calculated that since 2020 we’ve seen a 30% increase in requests for independent advocacy. We know that independent advocacy can help to redress the power imbalance that many people experience as they navigate the complexity of our health system or when things go wrong in healthcare and will continue to advocate for increased access to this support for more Western Australians.
• Through these changes, we’ve maintained our passion and commitment to advocating for consumer, carer and community rights and interests of people who use health services – and will continue to champion the importance of an independent voice for consumers in health.
• More broadly, we saw the start of significant changes in many services and systems that people in the community rely on: in disability, in aged care, in primary care (GPs and pharmacies), and in hospital and community health services.
• We must have strong and diverse voices involved in these discussions – with a collective understanding of the importance of joined up services. Otherwise, all these reforms risk creating a modernised, but still highly fragmented health and social care system that many of us struggle to navigate.
• To address that, we experimented with a novel approach to engaging consumers, carers and community members in response to WA Health’s work on the Emergency Access Reform program – and we’ll be reviewing that approach in the new year.
• We advocated on a wide range of health topics – including providing input to the WA Safety and Quality Strategy and advocating for robust and diverse consumer involvement in the decisions regarding the new Women’s and Newborns Hospital – this work will continue for years to come.
• Beyond health and social care, a major seismic event in Australia this year was the referendum on the voice to Parliament. I was personally very disappointed in the result. And as someone leading an organisation that exists to advocate for people to have a voice on the issues that affect them, I have been reflecting on what this means for us into the future. I will continue to share our progress on this work into the future.
• In that spirit, we’ve also been gathering feedback to help inform a refreshed direction for HCC, drawing on the lessons and the successes of the last 30 years and turning our attention to the future. So that we can set our path for a positive future with regards to the health of Western Australia.

Looking ahead to 2024, plans are already underway for us to celebrate the milestone of 30 years, which we’ll do in April next year. Watch this space for details of how we’ll be doing that.

One of the best bits of my job is working with, and hearing from the many people in our community who commit their time as consumer, carer, community or lived experience representatives to making our health system the best it can be for our whole community. And I know from discussions with many of you that our work as consumer representatives and advocates can sometimes feel hard and yet can also be enormously rewarding.

I also know that for many people, health issues and caring responsibilities don’t stop for the holidays. Particularly as we continue to navigate what it means to live well in this “with COVID” world.

I wish you all time over this holiday period with loved ones, or in nature, or doing other things that you know nurture your health and wellbeing.

I look forward to working with you and standing alongside you as we continue to advocate for the people of Western Australia in regards to health and health care next year and beyond.

Australians are being asked to go to the polls on October 14th and vote on whether the Constitution should be amended to recognise a First Nations Voice to Parliament.

Health Consumers’ Council hosted a lunchtime discussion on 6 October for people in representative roles as health consumers, carers, people with lived experience or community members to meet and learn about The Voice, and discuss the implications for healthcare and health outcomes.

In this presentation, we review some factual information about The Voice developed by Reconciliation WA and look at some of the expected health impacts for Aboriginal people of The Voice.

• Click here to watch the recording of this session
• Click here to access the slides of the presentation

Management Committee Member (voluntary position) 

Expression of Interest 

The Health Consumers’ Council (WA) Inc. is an independent, not for profit organisation that is passionate about ensuring the consumer is at the heart of our State’s health care system.

Our Vision is for equitable, person-centred, quality healthcare for all Western Australians.

Our Purpose is to increase the capacity of all people to influence the future direction of health care and to make informed choices.

About the role 

This year we have one Management Committee (Board) vacancy. We are interested to hear from people who bring any of the following perspectives or experience:

• Identify as Aboriginal and Torres Strait Islander

• Culturally and linguistically diverse background
• Are under 40 years old
• Have experience working with or in social enterprises
• Have experience working with fundraising or philanthropic activities.

Management Committee meetings are usually held monthly, with remote access available.

To be eligible to be a Management Committee member, you need to be an HCC member, or be willing to become a member. You can find out about membership at https://www.hconc.org.au/provider/join-us/

You also need to agree to the Objectives of the Health Consumers’ Council:

1. Provide information to Consumers to assist them to obtain health care appropriate to their needs
2. Provide advocacy for Consumers experiencing problems with the health system, particularly the vulnerable and or disadvantaged
3. Educate Consumers about the health system in Western Australia and new/changing health issues in general
4. Provide training and support for Consumers to assist them to influence changes in the health system to the benefit of the community
5. Maximise Consumer participation in decision making in the health system of Western Australia

Download HCC’s rules from the ACNC website https://shorturl.at/ptEHM

Submitting your expression of interest 

Please prepare a cover letter outlining your answers to the following questions:

• Why would you like to become a member of the HCC Management Committee?
• How will your skills and experience add to the effectiveness of the HCC Management Committee and the HCC?
• What has been your involvement in the community over the past five years, including not-for-profit organisations?
• How do you maintain current knowledge about healthcare delivery and patient experience in WA?

Appointment process 

Confirmation of appointment to the Committee will take place at our Annual General Meeting (AGM) to be held on Tuesday 28 November at 4.30pm (in person in Mount Lawley, or online via Zoom).

In the event that there is more than one nomination, a vote by members will be held at the AGM.

To apply 

Submit your letter, along with a current CV, to:

Glen Knight

HCC Management Committee

g_knight@peoplekind.org.au

The closing date for EOIs to be received is the 23rd October 

People with disability have advocated strongly for this day

The Final Report of the Disability Royal Commission was tabled in Parliament today (Friday 29 September 2023).

• Click this link to see the Executive Summary of the report.

The report may be difficult to read, as it contains first person accounts of people’s experience of violence, abuse and exploitation.

We encourage people who may be impacted as these stories are reported in the media to reach out to loved ones, networks or professional organisations for support.

In WA there are many organisations who can provide support including:

• Blue Knot Foundation
  • Phone: 1800 421 468
  • website: www.blueknot.org.au
• Relationships Australia Western Australia
  • Phone: 08 6164 0180
  • website: www.relationshipswa.org.au
• Yorgum Healing Services Aboriginal Corporation
  • Phone: 08 9218 9477
  • website: www.yorgum.org.au
• Kimberley Stolen Generation Aboriginal Corporation
  • Phone: 08 9193 6502
  • Website: www.kimberleystolengeneration.com.au

At Health Consumers’ Council we know that people with disability often have difficult experiences in the health system. We will continue to advocate for more people with disability to be involved in the design, delivery and evaluation of health services to ensure that they meet the needs of the whole community.

Click here to access a range of resources that have been created for people with disabilities in relation to accessing the health system.

By Clare Mullen, Executive Director, September 2023

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.