Search Results for: health information

Expression of Interest – Join the HCC Management Committee (Board)

Posted on October 5, 2023

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 

Women’s and Newborns Hospital relocation – HCC advocating for consumer voices

Posted on August 14, 2023

In April 2023 the WA Minister for Health made a surprise announcement that the new Women’s and Newborns Hospital – previously planned to be on the QEII site alongside Sir Charles Gairdner Hospital – would be located in Murdoch, alongside the Fiona Stanley Hospital.

Despite being contacted at that time by a senior WA Health member to reassure us that there would be significant consumer involvement as this work unfolded, we then didn’t hear anything until we followed up in June. At that time it became clear that there had been no consumer input to this new decision. And none since the announcement in April.

We’ve since been in discussion with a group of consumers who have been very involved in early consultations who raised a number of concerns. We have raised these with the Minister for Health and senior WA Health staff. We also held a consumer event on 20 July to gather more views and raise people’s awareness of what we know.

This is the presentation we went through at that event

Image of a slide from a presentation. On left of the slide is a map of the Perth metro area with the journey between Osborne Park, KEMH, and Fiona Stanley Hospital outlined. The title is "Consumer conversation on the Women's and Newborns Hospital Plans"

230720 HCC Women’s Hospital update

 

 

 

 

We had a rich discussion at that event which has been fed back to the project team:

  • There are significant concerns about the apparent complete absence of any consumer involvement or input to inform this decision – it’s very disappointing that clinical engagement is well underway but there has been no engagement with consumers so far.
    • People were also concerned that it has not been possible to find out what clinical input there was to inform this decision. The conclusion being reached is that there wasn’t any. This is very concerning to consumers as it doesn’t give confidence that clinical concerns.
  • Significant concerns that the proposed position will mean significant infrastructure reforms to enable the gold standard of tri-location of maternity, neonates and adult services.
    • The options raised at the meeting included moving PCH to the FSH campus and upgrading OPH to ensure it has the additional clinical services necessary for high quality maternity care (and avoiding repeating the issues at KEMH being an isolated maternity hospital)
    • It wasn’t clear in our discussion how this work would be less disruptive than the original plan
  • The lack of consumer involvement in decisions about priorities for services to be located at QEII
    • We heard that there are plans to site a new UWA Medical School on the QEII campus as well as the planned Comprehensive Cancer Centre.
    • There was a sense that while these are obviously important, the rationale for prioritising their position on the QEII campus over enable tri-location of services was not clear.
  • The lack of information about the plan for the 40 or so babies needing surgery within hours of birth.
  • Concerns about the risks to infant and parent mental health – and the associated long-term impact of early childhood trauma – for families needing access to neonate surgery

Separate to the meeting, we also received one consumer comment that they were supportive of improved access by public transport to the FSH site, particularly for people with disabilities.

Overall, there was general recognition that there is no immediately obvious “easy” solution to this issue. There was considerable frustration that it hasn’t been considered important to have consumer perspectives involved to help to identify the issues and be part of the solution generation.

The hospital project team are keen to seek broad consumer input. HCC will be facilitating a small group discussion in early September to explore what real engagement with consumers going forward could look like. Later there will be another discussion with consumers to discuss the implications of the planned move to this new location.

If you would like to be kept informed about this work, contact Jasmina Brankovich, HCC’s Policy and Systemic Advocacy Lead at jasmina.brankovich@hconc.org.au

Clare Mullen, August 2023

Advocating for consumer perspectives through committees

Posted on August 14, 2023

One of the ways Health Consumers’ Council advocates at a systemwide level for consumer perspectives in health is by participating in a range of committees – these are some of the committees staff were involved in between January and June 2023. If you’d like more information about any of these, please reach out to info@hconc.org.au

  • Clinical Governance Advisory Committee – Prison Health
  • Clinical Senate and Clinical Senate Executive
  • Curtin School of Allied Health Advisory Board
  • Electronic Medical Record Clinical Leadership Group
  • Emergency Access Reform Project Control Group
  • EMHS Weight Management Clinic Project Reference Group
  • Enrolled Nurses Industry Advisory Committee
  • Family and Domestic Violence Committee
  • First Responders Forum
  • Health Networks Leads Forum
  • Healthy Habits Reference Group
  • HIV Case Management Advisory Panel
  • IGR: Mental Health Governance Review
  • My Baby WA Steering Committee
  • Obesity Collective Leaders Forum (national)
  • Outpatient Reform Steering Committee
  • Safety and Quality Strategy Executive Working Group
  • SHR 4 Co-Leads
  • SHR 4 Steering Committee
  • SHR Partnership Group
  • SHR Program Board meeting
  • SHR Rec 4 Partnership Suite Working Group
  • State Health Operations Centre Steering Committee
  • State Peak Consumer Organisation Forum
  • WA Aged Care Collaboration Group
  • WA State Oral Health Advisory Committee
  • WACOSS Peaks Forum
  • WELL Co Clinical Advisory Committee
  • WELL Co Steering Committee

Updated by Clare Mullen, August 2023

It shouldn’t be this hard to be heard…

Posted on July 19, 2023

By Clare Mullen, Executive Director

It was heartbreaking to hear about the experiences of the the family of baby Ashlee, who died in 2019. We were asked to speak about this on the ABC Drive show this week after the Coroner found that Ashlee’s death was preventable.

Ashlee’s dad spoke about how difficult it was to have their voice heard in the health system. He described how they had to resort to getting lawyers involved just to get answers, and to get an acknowledgement that something had gone wrong.

Sadly, the experience of trying to get answers from the health system, or an acknowledgement or an apology from health services after something has gone wrong, can often be a distressing experience – adding more pain to an already terrible situation.

Let’s be clear – this experience, and other incidents like it, should not happen. 

We want no family to go through this situation.

That’s why we advocate for a patient safety culture in our hospitals. A big part of that is listening to families and patients when they raise concerns.

We know people believe that safe care is care where they feel heard by the treating team.

We believe that part of that safety culture would see consumer perspectives being taken on board at every level of decision making that impacts on patient – from bed level to Board level. We believe this is critical to making sure that decisions that affect safety and quality – such as resourcing and staffing levels – in hospitals are made with consumer perspectives front and centre.

Use Aishwarya’s CARE Call to speak to a senior staff member

Thanks to the advocacy of another family who also experienced a tragic death in a hospital, people in WA public hospitals have another way to have their voice heard in the health system.

If you are concerned about a loved one’s condition when they’re in hospital, and you feel you’re not being heard when you speak to staff, you can An image of a heart with wings, next to the title Aishwarya's CARE Call. A speech bubble with "Are you worried?". We need to know.use Aishwarya’s CARE Call.

This is a number in the hospital where you can speak to a senior staff member who will listen and action your concerns there and then.

If things go wrong

Where something has gone wrong in health in WA, and if you’re having trouble getting answers, Health Consumers’ Council can help by walking alongside you. We can help you to get information about what happened so you can decide what action you might want to take. That could be asking to meet with the hospital team, submitting a complaint, accessing your health records, etc. Our team can advise on writing letters, or accompany you to appointments if you would like.

We also have information on our website to help you navigate the process of making a complaint if that’s what you want to do.

Health Consumers’ Council is an independent charity that was set up to provide a way for consumer, patient, carer, and family voices to be heard at every level of the health system. We were set up almost 30 years ago by people who wanted there to be an independent body that speaks up for consumers in health. We offer an independent advocacy service that can walk alongside consumers, patients, and families who are seeking answers and redress when things go wrong in health.

Unfortunately, limited resources mean we’re not able to be available to everyone that could benefit from our support.

WA needs more “in the moment” advocacy

Ideally, people would be able to access individual advocacy support where and when it’s needed. We’d like to see independent advocates available on site in our hospitals. We would rather be able to help people assert their rights in the moment, to avoid things going wrong.

As Ashlee’s family commented – you should haven’t to resort to lawyers to get your voice heard in health.

Long awaited positive changes in reproductive technology law

Posted on July 9, 2023

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!

Interested in integrated care? Time to get interested in interoperability…

Posted on May 8, 2023

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.

Book cover: The Digital Mindset - What it really takes to thrive in the age of data, algorighms and AI

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

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".

December 6, 2022

 

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

 

Consumer participation payment – HCC process change

Posted on December 14, 2022

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

Keen to help?

Posted on November 23, 2022

Systemic issues are problems that impact people every day through inequality, discrimination and barriers to access and inclusion. Examples of systemic problems in the Australian health system include racism, emergency departments and services unable to cope with demand, chronic disease management and difficulties accessing mental health care. Most recently, the Covid-19 pandemic has highlighted the cracks in our system, which has led to large gaps in health care services, burnout among health workers and increased anxiety among everyday people living in Australia.

People often report feeling overwhelmed and angry due to systemic problems. Although they are large and often related to government decisions and social issues, one person can do a lot.

Systems do not change; people do.

 So… what can YOU do?

 

See here for a letter template!

 

One thing to remember when fighting systemic “giants” is that you and your rights matter…but so does your health and well-being. These issues are often overwhelming and can be life-or-death issues for individuals and communities, so it is important to have support and ways get to help if it all feels too much.

System Navigation & Emotional Support

System Navigation Support:

Peer Pathways – 9477 2809 or https://peerpathways.org.au/

CoMHWA’s Peer Pathways project is a West Australian, Statewide helpline for people with mental health challenges to find the supports needed to promote mental and physical wellbeing. Peer Navigators will assist you, your family and your carers to navigate services across the State, including finding counselling and wellbeing services that meet your needs.

Crisis lines

Crisis Care 1800 199 008 (24/7)

Entrypoint 1800 124 684 (Mon-Fri 9am-7pm; Sat 9am-5pm)

MHERL (Mental Health Emergency Response Line) 24/7

– Metro 1300 555 788

– Peel 1800 676 822

– Regional 1800 552 002

Lifeline 13 11 14 (24/7) or text 0477 13 11 14 or chat online – https://www.lifeline.org.au/crisis-chat/

1800 Respect (24/7) – 1800 737 732

Women’s Domestic Violence Helpline (24/7) – 1800 007 339

Men’s Domestic Violence Helpline (WA) – 1800 000 599

For translation and interpreting services, call TIS 13 14 50

 

Once you’ve taken care of yourself, you’re ready to begin your advocacy adventure.

The goal of systematic advocacy is to bring positive and lasting change to entire communities of people. There are many ways to support change, from passive actions such as sharing information and talking to loved ones, to active and radical advocacy, including marching in protests and pushing campaigns.

 Everyone has a type of advocacy that will fit their passions and strengths, and some of the most common actions are described below.


Sign or start petitions

If you are on social media, you will probably see petitions being shared around by friends and family, advocating for change.  Petitions are a great way to create awareness and gather tangible support from community for specific issues.  Often, petitions begin after an individual or community have had a negative experience or terrible outcomes, and the people around them are energised to create change so that it doesn’t happen to anyone else, or so something good becomes part of policy for the future.

If you’re on social media, you’ll likely see friends and family sharing petitions advocating for change. Petitions are a great way to raise awareness and get specific support from the community for specific issues. Petitions are often started after a person or community has had a negative experience or had devastating outcomes, and the people around them are energized to create change so that it doesn’t happen to anyone else.  Sometimes petitions are more positively started, when something good happens and people want to have it made permanent.

In WA, you can view a range of Petitions for the Legislative Council here: Current Petitions.

E-Petitions that you can sign can be found here: E-Petitions.

How to get a Petition to Government: Guide to Petitions

There are also lots of other petitions, like #RaiseTheAge and others run on websites like Change.org or The Action Network.  You can support community action by adding your name to the petition.  Some also have options to donate or share with your networks.


Educate yourself and your community

Action and change are often lacking because there is no awareness of the existence of a problem! By hopping online, talking to an expert, or going to your local library, you can gather information and start telling people in your world about the need for change, encouraging them to share theirs! Sometimes when we learn new things, we feel uncomfortable for many reasons. Keep trying, keep exploring and encourage yourself to stay open to different people’s experiences!

 


Respond to strategies and consultations

Governments and other large and powerful organizations often hold consultations on major changes or proposals, such as WA’s abortion reform or Australia’s National Cancer Care Plan. Reviewing and responding to open inquiries through surveys, phone calls, or other written methods can be powerful, especially if the strategies affect you or someone you love.


Volunteer your time

Volunteering is a great way to get to know the issue and have a say in a meaningful, hands-on way.  Volunteering at hospitals or community gatherings is meaningful and rewarding and can make a huge difference in your community.  Volunteering WA is a great website to help you find opportunities in your area.


Join a protest!

In WA we have a range of issues that often generate peaceful protests and marches across the State.  Keeping an eye on social media or following certain issues and campaigns you are passionate about can also lead to you being involved in protests, through turning up on the day, sharing content on social media, or having conversations with key people in your life to raise awareness.


Speak to your local Member

This is something that a lot of people aren’t aware they can do… you can meet with your local member or parliament! Contact their office and ask to book an appointment or phone call or turn up when they’re making a public appearance.  Our government members are there to represent us and our voices, to advocate on issues that impact us, and to help create change at a government level.

If speaking isn’t your thing, you can also email or write to your local member or Minister of a particular issue.  Explain what is important to you, and why.  Tell them your experiences and ideas for improvement and positive change.  Encourage and ask them to take a stand for issues you feel need to be talked about more.

This can happen whenever, either to introduce yourself as a member of their electorate, or to raise important issues and actions at key points in time.  The more people contacting their local members on issues, the more local members will pay attention and act in government.

See here for a letter template!


Vote!

Voting is one of the best things we can do for change.  Make sure you read up on the parties you are voting for, check their positions on certain issues that you are passionate about.  One way to do this is through ABC’s Vote Compass, or looking at unbiased election guides that explain each issue and the different parties’ policies or stances.  Talking with different candidates may also be helpful, either by giving them a call or meeting them.

As Bluey said, “You don’t vote for what someone looks like, you vote for who is the best leader”.


Donate & Share

If there are certain issues you are passionate about, but for whatever reason you are unable to engage in the ways listed above, the simplest way to help create change is to donate (time, money, attention) and share (verbally, in person, online, publicly, privately, via messenger pigeon!).  Look for local groups or organisations that advocate for rights and issues and get in contact to see how you can help with your capacity.  Nothing and no one are too big or too small.

Many people create artistic expressions of the issues and their opinions and beliefs.  Others support products or services that are committed to change, or DON’T support those that are against change.

Share hashtags related to the issues you are passionate about and have conversations with people about it (#MeToo, #BlackLivesMatter, #DonateLife).  Donate your time to train for individual advocacy or find a job that aligns with your passions.  Donate time & attention by reading or listening to material on the issues you want to understand.


 

See here for a letter template!

 

Rapid review of the Independent Governance Review with a consumer/lived experience/community lens 

Posted on October 31, 2022

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