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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 

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, 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.