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Archived Systemic Work

Below are summaries of some of the many systemic actions we have been involved in over the past 5 years.  On the side menu, you will see our most recent/ongoing systemic projects, partnerships and involvements.

If you have any questions about Systemic Advocacy in the Health System, or about any of our listed involvements, please email info@hconc.org.au 

 


Alcohol & Other Drug Consumer & Community Coalition

Background

In 2015, the Health Consumers’ Council was funded to co-ordinate a project to build on the recommendations from the November 2014 Forum, Improving Consumer Involvement in the Alcohol and Other Drug Sector.   An Alcohol and Other Drug Advisory Group (AODAG) comprising government agencies, not for profit organisations and consumers was set up to oversee progress.

The project specifically addressed the following two recommendations:

  1. to develop a common set of principles for engagement
  2. outline best practice engagement strategies for the sector

In 2017 the WA Primary Health Alliance funded HCC to support the ongoing work of the Alcohol and Other Drug Advisory Group (AODAG) to oversee a new project entitled “Improving Consumer Involvement in the Alcohol and Other Drug Sector”.

It was agreed that the term ‘alcohol and other drug consumers’ was inclusive of current users, service users, potential service users, family members and supporters.

The Alcohol and Other Drug Consumer & Community Coalition (AODCCC) was incorporated in June 2018 in response to the need and support for an AOD specific consumer advocacy body. We have recently received funding from the Mental Health Commission in order to progress our establishment and have now released our Mission, Vision and Values.

AODCCC Membership

Membership is open to people who use or who have used alcohol and other drugs, their family members and significant others. A link to an online membership application can be found here and on the Facebook page.  Hard copy applications are available here and can be emailed to info@aodccc.org.

Management Committee

Full details of the current Management Committee are provided on the Australian Charities and Not-for-profit Commission (ACNC) website.

Contact AODCCC

For any information please contact:
Email info@aodccc.org
Phone (08) 6311 8402

Cancer Care

 

Cancer Care

The Cancer Plan was released in February 2020 setting out the next five years of strategy in relation to cancer services. This work was undertaken by the WA Department of Health, and the Health Consumers’ Council supported the project through running a community survey and developing consumer videos reflecting consumer patient journey experiences. A summary of survey results is available here. The launch event featured a moving and articulate presentation from Advisory Group member Susannah Morris, who ensured the consumer voice was at the heart of the plan as much as possible.

Cancer Research

In May 2019 the Health Department’s Health Research Future Fund sought feedback on the involvement of consumers in cancer research. A large forum was convened with researchers and clinicians across the sector. HCC was funded to enhance the consumer voice into the process. We undertook a consumer survey, and presented a short video with consumer and carer experiences of being involved in research. Click the link for the Consumer insights in Medical Research Cancer  PowerPoint.

In summary, we strongly agree with the National Health and Medical Research Council that:

“Consumer and community involvement is about research being carried out with or by consumers and community members rather than to, about or for them.”

The Cost of Cancer Care

The Health Consumers’ Council partnered with Cancer Council WA to find out whether people are making informed financial decisions about where to get their cancer care.

We developed a short survey to find out more about the issue, and a report of the findings is here.

 

Dental Care

Dental Care

Access and costs are two issues we hear about frequently from consumers when it comes to dental care.

We have previously held a seat on the State Oral Health Advisory Committee; spoken on the radio with Geoff Hutchison about a consumer’s costs related to a child’s wisdom teeth; and run a survey to gather consumer stories and views on dental health. In 2023 we promoted a survey to encourage consumers to share their experiences as part of the Senate Select Committee into the Provision of and Access to Dental Services in Australia.

 


Digital Health & My Health Record FAQs

Digital Health

Our work in the digital health space is ongoing. Below is an archive of some of the previous work we have been involved.

There is so much going on in the digital health space. It is a complex area and difficult to know what issues need to focus on. People are rightly concerned about their data and its privacy. But being able to share your health information quickly could mean the difference between life and death. Queensland Health developed a Consumer Charter on Digital Health which aims to reflect consumer priorities and needs in relation to digital health.

In WA the Digital Health Strategy 2020-2030 was released, and a key initial deliverable will be creating a statewide electronic medical record in our hospitals. This may seem confusing, given that the My Health Record was implemented nationwide in 2019. As at December 2019, 22.68 million Australians had a My Health Record, with 2.4 million of those in WA. (See here) A key thing to remember is that:

  • An electronic health record is designed to have a more overall view of someone’s health, across hospitals, GPs, pharmacists etc.
  • A medical health record tracks medical care usually within one hospital.

We are currently working with the WA Department of Health to develop a Consumer Charter which focuses on digital health. HCC are convening 10 Kitchen Table Discussions on the topic and is currently seeking Discussion Hosts. The Kitchen Table Discussion comments will be used to form a Consumer Charter – this will include non-negotiable principles to guide future direction.

My Health Record Resources

In 2019, the Australian Digital Health Agency released a number of new resources, and we partnered with them to share them on our website and through social media. We also undertook a Consumer Survey – you can find the full report of our work here.

If you are using My Health Record, we recommenced you log in to take a look at your information and update your privacy settings. These brochures provide further information on how to use your My Health Record now that it has been set up.

How can I find out more?

Check out these Frequently Asked Questions

Please email us if you have any concerns regarding the My Health Record and we will ensure you are given access to the information you need.


Empowering Consumers with Disabilities

 

Resource list for people living with a disability (plus associated needs) and their carers, family and friends

HCC partnered with People With disabilities WA to deliver a project which examined health literacy materials and put them to the test of disability friendliness. The project delivered nine training sessions on Disability Health Rights for people with disabilities, and their carers, family and support people. Topics covered included: rights, ideas for getting better care, where to go for help, medical records and information sharing, and navigating the health system.

A series of booklets and videos were produced for this project, and are linked below. Working group members also shared their views on how health services could engage more with people with disabilities at this blog article:

Plain English

Easy-read

Plain-text (screen-reader compatible)

Videos 

 

 

 

 

 

 


Feedback Processes

In 2020, Health Consumers’ Council (HCC) worked with the Patient Safety Surveillance Unit in the Department of Health to learn more about how consumer feedback – including complaints and compliments – is collected, provided, and used for improving health services. We held a number of workshops with consumers and we also held telephone interviews with some consumers in regional areas. We held targeted sessions for Aboriginal community members, and Consumers of Mental Health WA ran a targeted session for consumer of mental health services.

Click to see issues, barriers and ideals from this consultation

Care Opinion

In 2020 the Patient Opinion platform, an independent, moderated place for people to provide feedback, was renamed to Care Opinion. This platform is now one portal for people to provide feedback on health and social services. It mirrors the same platform available in the UK, which uses the power of story to transform health and human services.

A non-profit organisation moderates the platform, and services subscribe to be able to receive notifications, reports etc. WA is the first state to have every public hospital as a subscriber. You can find out more or post a story here.

WA Health Complaint Policy Review

The Department of Health (DoH) consulted on a revised version of the WA Complaints Management Policy and these new versions appear below. We undertook a series of consultations to support the work survey and have collated this feedback.

WA Health Review of the complaints and feedback process

Following on from this consultation and the release of the new complaints guidelines, DoH consulted about the process of making a complaint and giving feedback. We heard about the many barriers to giving feedback, including concerns about what might happen to the feedback. This was especially prominent in the discussions we had with Aboriginal people. It was also raised that there is no easy way to give feedback about the whole system, not just one health service.

Read the full report here

 

Informing New Models of Primary Care 2017

Informing New Models of Primary Care was a 6 month collaborative project between the WA Primary Health Network (WAPHA), Health Consumers’ Council, and Curtin University undertaken in 2017. Primary Care refers to the care you receive from your GP and other health care providers outside of the hospital system. WAPHA is supported by funding from the Australian Government under the nation’s Primary Health Network Program.

Prior to this project being established, WAPHA and Curtin undertook consultations with general practice staff to inform how care can best be provided to people to keep them well and out of hospital as much as possible.

Informing New Models of Primary Care project was the second stage, and HCC worked with WAPHA and Curtin but this time focusing on the experience of people who access GP services. It involved convening a series of focus groups with people with multiple chronic health conditions with management under a Care Plan. Findings of these discussions have been compiled in the  Naive Inquiry Brochure and were shared with the community at a community forum held on 1st December 2017. This forum provided an opportunity to further the conversation on the developing models of care.

Medical Devices

 

Have you seen the Netflix Documentary The Bleeding Edge? In not, watch it now…

The day before the National Mesh Forum, which was convened on 5th April 2019 by the Health Consumers Councils across Australia and funded by state health departments, the Therapeutic Goods Administration (TGA) released Action Plan for Medical Devices. This was discussed at the Forum and is the culmination of some months work, but health consumers councils were not included in its development.

Strategies on the Plan:

Strategy 1
Improve how new devices get on the market
Strategy 2
Strengthen monitoring and follow-up of devices already in use
Strategy 3
Provide more information to patients about the devices they use

If there’s one thing consumers need to know…

Devices do not need to have as much evidence behind them as medications in order to be listed with the TGA. This is in part reflects the assumption that there is a detailed consent conversation between patients and their surgeons. We would urge all people to think of any procedure requiring any implanted medical device as an experimental treatment, and consent with that level of attention and care.

In essence, medical device companies assure TGA of the safety of their devices. It is a highly competitive and lucrative market, every bit as powerful as pharma, or perhaps more so. Post-market testing is supposed to occur, noting when complications occur and ensuring the TGA are aware. This doesn’t happen as much as it needs to, and is not compulsory for surgeons, although it is for medical device companies. Technically the TGA can prosecute medical device companies who don’t advise of complications but in practice this happens rarely.

Again, we recommend you watch the Bleeding Edge Documentary to understand more and what’s at stake for patient safety.

Bleeding Edge Documentary

America has the most technologically advanced health care system in the world, yet medical interventions have become the third leading cause of death, and the overwhelming majority of high-risk implanted devices never require a single clinical trial.

In The Bleeding Edge, Academy Award nominated filmmakers Kirby Dick and Amy Ziering (The Invisible WarThe Hunting Ground) turn their sights on the $400 billion medical device industry, examining lax regulations, corporate cover-ups, and profit driven incentives that put patients at risk daily.

Across the globe there is an investigation underway by the International Consortium of Investigative Journalists about how medical devices are listed on the different jurisdiction’s list of approved devices. Called The Implant Files, the Consortium’s website provides latest news and updates in relation to implants.

The Health Consumers’ Council in WA recently noted the implications for how devices are put onto our Therapeutic Goods Administration (TGA) list through the work done on the Pelvic Mesh Inquiry held in 2017-18. In summary, the TGA often relies on slim evidence from other jurisdictions to approve a device, and whether there are any reports of post implant complications to confirm a device’s safety. However, reporting complications is not compulsory, and very often, clinicians don’t. They may not be aware that there is a trend, thinking “it’s only this one person, so is it relevant?” or for whatever reason, they don’t report.  Consumers can report faults in implants they have had put into their body, if they know there is a place to do so on the TGA website, and if they know the serial number of the device. In other words, this is also not likely.

There is no easy way of knowing which human being has which implant, as there are only registers for certain kinds of devices, and records are often not digitised or easily shareable for it to be easy to do a product recall. It should be like doing an airbag recall for your car, but it isn’t.

The Health Issues Centre in Victoria has begun an anonymous survey for consumers who think they may have been impacted by implants, which you can complete by clicking on this link. Hernia mesh has already emerged as one of the leading implants causing pain and suffering for patients.


Mesh Implants

A GLOBAL HEALTH CRISIS – PELVIC MESH IMPLANTS

It has taken some time for the scale and extent of the impact of pelvic mesh implants for women to treat stress urinary incontinence and pelvic organ prolapse. Once hailed as the perfect solution for an enduring surgical fix for these non-life-threatening conditions, it has left a swathe of women with permanent, life altering consequences. Persistent pelvic pain at rest. Inability to have sex. Inability to continue working, and the financial impact often amplified by failed marriages as the lack of intimacy took its toll. The full list of complications is listed on the Therapeutic Goods Administration mesh hub.

In 2017 Australia undertook a Senate Inquiry – entitled Number of women in Australia who have had transvaginal mesh implants and related matters. We literally did not know how many women had been impacted. There were 13 recommendations in the final report, with a mix of federal and state responsibilities to effect implementation. There was even one on effective informed consent processes. It was clear from submissions and hearings that women were not informed about the potential horrific consequences of their choice, and that the mesh is extremely complex to remove. With the divide of responsibility between state and federal governments and the fact that most of the implant surgeries were performed in private hospitals, it is difficult to track real progress. Some meshes have been banned from use, but by no means all. Many women are still unaware that their sequelae of symptoms are related to their mesh implants. GPs and specialists may also be unaware.

WA PELVIC MESH SUPPORT GROUP

The peer support group the WA Pelvic Mesh Support Group has its own website and is an essential stakeholder in WA’s response to the mesh crisis.

WA PELVIC MESH COMPLICATIONS CLINIC

This clinic has been set up in King Edward Memorial Hospital and has been operating since 2017. There is a committee of clinicians and consumers who meet to discuss the clinic’s model and progress, as this area is complex and changing. The committee continues to aim to advance the recommendations of the Inquiry.

UNFINISHED BUSINESS – A NATIONAL FORUM ON THE IMPACT OF MESH IMPLANTS

A National Mesh Implant Forum was held in Melbourne on Friday April 5, 2019, to consider all aspects of Australia’s mesh implant crisis. The Forum was proudly convened by the Health Issues Centre and Health Consumers NSW, Health Consumers Queensland, Health Consumers’ Council (WA), Health Consumers Alliance of South Australia, Health Care Consumers (ACT), Health Consumers Tasmania.

The event brought together mesh injured consumers, carers, regulatory authorities, health officials, the Chair of the Senate Inquiry into mesh and consumer advocates to create solutions and bring about real change. The forum considered not only the impact of pelvic mesh, but the emerging parallel crisis involving people who have received hernia mesh implants. A full report is available here.

NEW REPORT – HERNIA MESH IMPLANTS – CONSUMER SURVEY

Health Issues Centre Victoria initiated the Mesh Device and Implant Failure study late last year and of the respondents, a sizeable 183 patients have already reported major problems with their hernia mesh implants. 70 per cent of these are men. You can read the report here.

According to publicly available figures nearly 100,000 Australians are hospitalised for hernia each year. However, the numbers of patients that go on to have pelvic mesh implants and that are negatively impacted is not known. People who would like to report complications of hernia procedures using mesh can complete the survey here.

PELVIC MESH FAQs

What is pelvic mesh?

Pelvic Mesh refers to polypropylene mesh implants to treat women treated for stress urinary incontinence or pelvic organ prolapse.

What are the complications of pelvic mesh?

Complications include pain, inflammatary reactions to the mesh, persistent infections, bleeding, with the mesh kinking, moving or migrating and causing damage to surrounding organs.

The actual number of women who experience complications may be under-reported, so while some women experience the benefits from implants, other women experience any or all of these complications as they are  listed below from Australia’s Therapeutic Goods Administration (TGA) website: https://www.tga.gov.au/alert/urogynaecological-surgical-mesh-complications

-punctures or lacerations of vessels, nerves, structures or organs, including the bladder, urethra or bowel (these may require surgical repair

-transitory local irritation at the wound site

-a ‘foreign body response’ (wound breakdown, extrusion, erosion, exposure, fistula formation and/or inflammation)

-mesh extrusion, exposure, or erosion into the vagina or other structures or organs

-as with all foreign bodies, mesh may potentiate an existing infection

-over-correction (too much tension applied to the tape) may cause temporary or permanent lower urinary tract obstruction

-acute and/or chronic pain

-voiding dysfunction

-pain during intercourse

-neuromuscular problems including acute and/or chronic pain in the groin, thigh, leg, pelvic and/or abdominal area

-recurrence of incontinence

-bleeding including haemorrhage, or haematoma

-seroma

-urge incontinence

-urinary frequency

-urinary retention

-adhesion formation

-atypical vaginal discharge

-exposed mesh may cause pain or discomfort to the patient’s partner during intercourse

-mesh migration

-allergic reaction

-abscess

-swelling around the wound site

-recurrent prolapse

-contracture

-scarring

-excessive contraction or shrinkage of the tissue surrounding the mesh

-vaginal scarring, tightening and/or shortening

-constipation/defecation dysfunction

-granulation tissue formation.

I've been told that it is a new type of mesh, or that it's a sling. Is this the same?

Mesh, tape, sling - it is all polypropylene mesh. It is a complex area and rapidly changing so clinicians may not be aware that they are in essence, all the same. If you don't want mesh, you have the right to request native tissue repair or a procedure like a Burch colposuspension. It is your body and you need to feel confident you are providing informed consent.

What are the alternatives to using mesh for incontinence and prolapse?

Non-surgical options includes physiotherapy and pessaries. Surgery should be considered a last resort when all other options have been exhausted.

There are surgical options which don't include mesh such as Native Tissue Repair and Burch Colposuspension. Have a look at the Australian Commission on Safety and Quality in Healthcare's resources on this page for Pelvic Organ Prolapse and Stress Urinary Incontinence and remember the key advice that surgery should be the last resort when all other options have been exhausted.

You will be the one who will bear the consequences if you do have complications from the mesh, so it's important that you provide informed consent. The Choosing Wisely campaign has created these questions to help you get started. http://www.choosingwisely.org.au/resources/consumers/5-questions-to-ask-your-doctor - plus it is useful to ask how many of the same procedures your surgeon has done, and what the outcomes have been. Any reluctance to answer this question may signal you have not found the right surgeon for you.

Is mesh banned?

No it is not banned. It has been banned for some, but not all types of pelvic organ prolapse surgery, but for the most common surgery, stress urinary incontinence, it has not been banned. From 1 December 2018, all new  surgical mesh devices seeking approval from the TGA will need to meet the higher evidentiary requirements of a Class III medical device. This does not apply to mesh devices already on the TGA register however.

Can I get the mesh taken out?

It is very difficult to fully remove mesh. Women are offered partial removals of mesh, for example snipping of the part protruding through the vaginal wall. Many women do not want partial removals as the remaining mesh frays and causes ongoing issues, and it may be more difficult to get the rest of the mesh out. Some women have taken the decision to self-fund and travel overseas to where other surgeons more experienced in full mesh removal may be able to provide assistance. We are continuing to work on this as a nation and the options are continually evolving. The WA Pelvic Mesh Support Group  can be an important source of support to find out latest options, or you can call the Health Consumers Council on 9221 3422/ 1800 620 780 for country callers, or email info@hconc.org.au

What help is available for women?
  • You can call the WA Pelvic Mesh Clinic line at King Edward Hospital on 1800 962 202. This is answered from 8.30-4pm Monday to Friday, with a Message Bank for after hours or when the line is busy. The person answering the phone is not a doctor, nurse or midwife. You will be linked with the Mesh Clinic for an appointment if appropriate. Unfortunately there are currently long waiting times for appointments.
  • In WA there is the WA Pelvic Mesh Support Group which can connect you with women who have had these procedures
  • Take this information sheet to your trusted health provider to discuss your current or future options
What has been done about regulating mesh?

The Therapeutic Goods Administration  (TGA) regulates medications and medical devices. However, the evidence required to register a device is by no means as comprehensive as that required to register a medication.

What can I do to report complications?

You can register your complications on The Therapeutic Goods Administration (TGA) website here: https://www.tga.gov.au/alert/urogynaecological-surgical-mesh-complications

You can also call the Mesh Line if you are in WA on 1800 962 202

What happened about the Senate Inquiry into mesh?

A Senate Inquiry into pelvic mesh was held in 2017, and the Recommendations have largely been accepted by our nation's Health Minister, who apologised to women harmed by mesh implants. They are currently in the early stages of being implemented, and health consumer councils across Australia are working with key bodies to ensure that there is a more consistent approach across Australia.

What about hernia mesh?

Hernia mesh is emerging as the next key area of interest. The complications are very similar, as is the negative impact on people, and the difficulties they can face in getting help. A new peer group has been started in WA - Mesh Too Western Australia.

Pregnancy and Maternity Care

My Baby WA Pregnancy App

The My Baby WA app launched in June 2021 withy a massive initial response.

The app was developed through a partnership between the WA Country Health Service and Health Consumers’ Council Wa. The app is to assist women and families to navigate the pregnancy, birth and early parenting periods- providing information that is specific for women and families in Western Australia.

My Baby WA provides pregnant women and families in Western Australia accessible and evidence based information during their pregnancy. Functions on the app include;

· All the information you need on pregnancy, birth and your baby

· A WA maternity service locator including models of care available at each service

· Week by week pregnancy information

· An interactive timeline for women to track their appointments, tests, screening and education offered to them during their pregnancy

· A baby bump photo gallery

· Noongar lullabies to play and sing to your unborn baby

· Option to fill in the Women’s Experiences of Maternity Services to Survey to provide feedback to you maternity service.

· Mum and Partner modes for pregnancy, birth and early parenting tips

The app can be downloaded on iPhone or Android.

International Patient Safety Day Q&A Panel – Maternal and newborn safety

To mark World Patient Safety Day 2021, and the theme of safe maternal and newborn care, in partnership with AHPRA and Women’s and Newborns Health Network, Health Consumers’ Council convened a Q&A panel discussion exploring maternal and childbirth care.

We explored topics such as Aboriginal women’s experiences of childbirth, the impact of COVID on birthing women, why women and families’ feedback is important and how it changes things. We also confirmed the importance of education, and of involving birthing women and families at all stages and at all levels in designing and evaluating maternity services.

Watch on catch-up (1.5 hours)

Listen on catch-up (1.5 hours)

National Strategic Approach to Maternity Services

We have been involved with this national strategy as much as possible, although it has been some time since there was an update. You can find out more about maternity services in Australia here.


2022 Response to WA Abortion Reform Consultation

Link to a PDF copy of our response is here:

2022 Response to WA Abortion Reform Consultation

Re: Request for Submission and Sharing of the Abortion Reform Consultation Process

Health Consumers’ Council thanks you (Dr Robertson) for reaching out to us and requesting our engagement with this consultation on Abortion Legislation in WA. We agree that these laws are long overdue for revision and reform and we have shared the consultation with our networks.

The Health Consumers’ Council of WA unequivocally stands for the rights of all people to access free, decriminalised, safe, timely and compassionate abortion care as part of essential healthcare and support the removal of access to abortion from the Criminal Code.

Earlier in the year, we added our signature to the Australia position statement on the Roe v Wade decision in the US published by Children by Choice, and welcomed the WA Minister for Health speaking on reproductive rights and equitable access to abortion for women and people with uteruses across WA, and we have been welcoming of the safe access zone legislation.

We know that accessing free, high quality, comprehensive abortion care in WA is difficult for many people. Factors including someone’s suburb or town, finances, the availability of clear, accessible, and culturally appropriate health information, and the lack of public services all impact on someone’s ability to access the care they need. We also know from MSI Australia that First Nations’ peoples, trans and gender diverse peoples, members of migrant and refugee communities, people on temporary visas, and people with disabilities can face additional barriers to abortion care that are further impacted by age, economic status, stigma, and discrimination. We affirm everyone’s individual right to choose what is best for them. Access to abortion is not a moral or religious debate, it is a healthcare right that centers on choice, respect, and self-determination.

Health Consumers’ Council knows from our engagement with the WA community that all stated options in question 9 have been and continue to be barriers to accessing abortion, particularly for people who may be marginalised, who are young, who are Aboriginal, who are Culturally & Linguistically Diverse and who are part of the LGBTQIA+ community. We anticipate that even with the proposed amendments, there will continue to be barriers until more is done to address timely access to clinical assessments, medical practitioner’s conscientious objections, health literacy/accessibility of relevant, plain-language information, financial impact for anyone not able to access bulk-billed abortion services, rights around age & access, lack of service provision throughout the state and especially lack of remote/rural services. We also recognise and stand with current abortion providers who recognise the stated barriers for service provision as stated in question 12.

Health Consumers’ Council would also like to respond to and note some nuances around the remaining submission questions:

Question Thirteen – While we agree that the need for mandatory counselling should be removed for this essential healthcare service, we s also agree that every person should still be able to easily access timely, cost-effective counselling and support around abortion if they choose.

Questions Fourteen & Fifteen – In order to increase equitable access to safe abortion, we believe that, in the same way any other form of healthcare treatment or procedure is approved, only one medical practitioner should be needed for a person to access an abortion. We also believe that if a medical practitioner should conscientiously object, they should be required to refer on in a timely manner to someone confirmed to affirm abortion, with tight processes around this stated publicly. For example, a clear and publicly available procedure that people seeking abortion can easily access and follow confidently when advocating for their rights. We believe that abortion care is healthcare and as such, access to abortion is a healthcare right. Health practitioners should do everything in their power to advocate and uphold the choices of their patients wanting to access abortion, whether they agree morally or not.

Questions Sixteen & Seventeen – We support increasing the gestational age to 24 weeks, while also noting the nuances and community concern for issues like eugenics and Disabled People’s right to life. We believe that increases in gestational limits are much needed. Less than 1% of abortions occur at later pregnancy gestations, they are experienced people who face complex situations, and they need to have kind and compassionate care (MSI, 2022). As viability of a pre-term foetus is often debated, and no universal consensus has been reached, this can be an ethical consideration of many people in Australia. However, access to abortion is not equitable, and therefore extensions on gestational limits are vital to uphold the right to choose and access health care. If the pregnant person chooses an abortion at any stage, there should be no involvement from anyone besides the pregnant person and their healthcare provider/s, with appropriate consultations around specific, high-risk procedures. We strongly support the repeal of the Ministerial ‘Ethics’ Panel on abortion, and we advocate for clear processes to be implemented and publicly available for the proposed second medical practitioner consultation for late term abortion.

Question Eighteen – We believe that there should be no requirement for Ministerial approval for a health service to perform abortions, provided the health services are equipped to do so safely. Further, we believe that any suitably equipped health service receiving public funding should be required to provide timely, legal, high-quality, free, and safe access to abortions at any stage, for anyone living or residing in Western Australia. We also note that repealing the Ministerial involvement via approval and panels will hopefully increase the availability of free abortions and the prevalence of services providing this vital healthcare, and urge the WA Government to invest more into making abortion accessible in every way.

Health Consumers’ Council provide individual advocacy to consumers of healthcare across WA and will continue to advocate individually and systemically for equitable access to all healthcare, including access to timely, safe, free, and legal abortion, for everyone living in WA, especially those who have been marginalised. We will continue to advocate with community for improved access to information and access to reproductive rights, contraception, culturally competent care, and gender and sexuality affirming care.

The Health Consumers’ Council welcomes the opportunity to assist further in consulting with community and providing advice to policy makers to enable much needed change to abortion laws in WA.

 

 

 

We acknowledge Aboriginal and Torres Strait Islander peoples and communities as the Traditional Custodians of the land we work on, specifically the Wadjuk people of the Noongar nation, and pay our respects to Elders past, present, and emerging. We recognise that sovereignty was never ceded and commit to continuing advocacy for anti-racism in the health sector.

 

Position statement – Roe vs Wade decision in the US

The Health Consumers’ Council of WA unequivocally stands for the rights of all people to access legal, safe, timely and compassionate abortion care as essential healthcare.

Today we join many people and organisations across Australia and add our signature to the Australia position statement on the Roe v Wade decision in the US published by Children by Choice.

We welcome the statement by the WA Minister for Health in support of reproductive rights and equitable access to abortion for women and people with uteruses across Australia. We support the WA safe access zone legislation that protects the rights of people accessing abortions to do so safely and free from harassment or intimidation.

However, we know that accessing free, high quality, comprehensive abortion care in WA can be difficult for some people. Factors including where someone lives, their financial situation, the availability of clear, accessible and culturally appropriate health information, and the availability and affordability of healthcare, can all impact on someone’s ability to access the care they need. We also know from MSI Australia that First Nations’ peoples, trans and gender diverse peoples, members of migrant and refugee communities, people on temporary visas, and people with disabilities can face additional barriers to abortion care that are further impacted by age, economic status, stigma and discrimination.

We will continue to speak up – alongside our partners in WA – for improved, ongoing, timely and affordable access to these vital health services for all.

Health Consumers’ Council WA provides advocacy support to people accessing health services in WA. See https://www.hconc.org.au/individual-advocacy/

 

Past Diversity Dialogues

2021

Barriers and Enablers to CaLD population blood borne virus and sexually transmitted disease diagnosis and treatment

In partnership with the Community of Practice for Action on HIV and Mobility (CoPAHM) this panel discussion focused on the challenges around diagnosis and treatment of sexually transmitted infections (STIs) and blood-borne viruses (BBVs) in culturally and linguistically diverse (particularly migrant) populations.  The conversation touched on barriers such as language (including the challenge of using interpreters), low perception of risk, stigma and taboo and enablers mainly in the form of community peer led education programs as well as not generalising people from a CaLD background or certain continent plus universal testing.  You can read the report here and watch the recording hereYou can also see a summary of our 2021 sexual health events here.

Promoting sexual and reproductive health for CaLD youth 

Together with the Multicultural Youth Advisory Network of Western Australia (MYAN WA) we delivered a panel discussion on the unique challenges faced by youth from culturally and linguistically diverse (CaLD) backgrounds with a panel of largely lived experience speakers.  Youth and one professional speaker talked about gaining sex education and navigating access to contraception and reproductive health education and treatment in the backdrop of taboo, little to no education at home and diverse and often mixed cultural perspectives.  You can read the report here and also see a summary of our 2021 sexual health events here

2020

Exploring Challenges Around CaLD youth mental health

We partnered with Consumers’ of Mental Health WA (CoMHWA) on this event.  Our  panel discussed some of the complex and unique challenges faced by multicultural youth in Australia in regards to facing mental health issues and navigating diagnosis and treatment.  Some of the opportunities to overcome barriers were also explored with a panel of youth workers and youth with lived experience. Read the full report here.

Quality care from a physical distance: Delivering quality and culturally responsive telehealth services

This webinar was delivered in partnership with the  Digital Health Cooperative Research Centre.  The focus of this  webinar was delivering quality and culturally responsive telehealth services to people from culturally and linguistically diverse (CaLD) backgrounds, through the Covid-19 pandemic and beyond.  The panel was made up of advocates providing a lived experience perspective as well as health and interpreting professionals.  Note the clarifications of matters discussed below, read the report here and Watch the recording here.

Clarifications on matters around interpreters discussed in the webinar (correct at time of writing)

  • Free interpreting through TIS is available for GPs but not allied health professionals.
  • Video interpreting with TIS is now available.
  • GPs cannot charge for using an interpreter (there is no MBS item number).  If consultation time is extended, then it may be suitable to charge for a longer consultation if clinically justified.

2019

Creating Connections: Engaging effectively with Culturally and Linguistically Diverse (CaLD) community members in regional WA  

This diversity dialogue session was done in partnership with WA Country Health Services. It focused on the sharing of lived experiences in engaging cross-culturally to enhance the patient experience, including discussions of strategies in working cross-culturally. Read the full report here. 

2018

Delivering health information to people from CaLD background

This Diversity Dialogue forum was held in partnership with Department of Health’s Cultural Diversity Unit and Ishar Multicultural Women’s Services. The forum allowed us to gain insight around how community members access health information, seek various perspectives on useful health education materials, and explore effective ways of delivering health information. Read the full report here.

Difficult Conversations – Talking about Advance Care Planning (ACP) with people from culturally and linguistically diverse backgrounds

This Diversity Dialogue forum was conducted in collaboration with the Department of Health through the Health Networks Clinical Leadership and Reform, Clinical Excellence Division and the Cultural Diversity Unit, Public and Aboriginal Health Division. The panel of consumers and service providers have knowledge and experience in ACP and/or cultural understanding of their communities. Attendees had the opportunity to engage with the panel of Community Leaders, to share  thoughts and ideas and be part of the changes that will ensure difficult end of life conversations occur in a culturally sensitive and effective manner. Read the full report here.

The Use of Interpreters in healthcare settings

This session was a  joint venture between the Health Consumers’ Council (HCC) and the Multicultural Youth Advocacy Network WA (MYAN WA). The specific focus of the session was the use of interpreters in medical settings. The aim of the session was to bring health service providers, practitioners, youth and settlement sector workers and young people together to build knowledge and awareness and to develop strategies and recommendations on this topic. The first half of the forum included a panel of professionals that work in the area and young people who shared their knowledge and experiences on this topic. Read the full report here.

2017

What is equal opportunity & how does it support equity & diversity in healthcare provision?

This Diversity Dialogues explored ‘what does the inverse care law look like in Western Australia and how does it link with equal opportunity and equity?’ Attendees heard more about equity and diversity in healthcare and participated in discussions regarding this at the Diversity Dialogues Forum. Download the report here. 

2016

Effective mental health practices when working cross culturally

This Diversity Dialogues was held in partnership with Fremantle Hospital and focused on engaging with communities, the impact of funding and staffing cuts on service provision,  the ability to offer equitable service, how to be more inclusive of diversity in a mental health setting and how to create an environment that celebrates and welcomes diversity. Download the report here. 

2015

Diversity Dialogues | Developing a culturally aware hospital

This Diversity Dialogues was held in partnership with Fiona Stanley Hospital (FSH). FSH staff, healthcare and other service providers and health consumers attended this free forum to explore ways to develop hospital services and patient care strategies that respond to cultural diversity. The outcome of this forum was to formulate recommendations regarding best practice at FSH.  The panellists from a range of cultural backgrounds, shared their knowledge and experience around culturally aware practice, building culturally inclusive services and discussing the importance of cultural awareness in best practice. The forum was co-facilitated by Louise Ford, Consumer & Community Engagement Manager, HCC and Michelle John, Customer Liaison Service Manager, FSH.

A multicultural perspective on pregnancy, childbirth & postnatal care

This forum was held in partnership with Department of Nursing & Midwifery Education and Research at KEMH and was co-facilitated by Louise Ford (HCC) and Jenny Owen (Midwifery Educator – KEMH). This Diversity Dialogues forum was held to explore ways to work effectively with women and families, from CaLD backgrounds, throughout pregnancy, birth and postnatal care. There were opportunities to ask questions of the Panel members as well as networking. The Panel was made up of people from various cultural backgrounds shared their knowledge of beliefs and practices. Download the report here. 

2014

Cultural interpretations of, & thoughts around Mental Health

This Diversity Dialogues was presented in partnership with Community West.  This Diversity Dialogues focused on exploring concepts, cultural interpretations of and thoughts around mental health. The aim of the forum was to establish how these can be used to inform practice with regard to treatment, adherence to treatment and encouraging and supporting patient/client engagement, including those who have experienced torture/trauma i.e. refugees. Download the report here. 

Dementia

This Diversity Dialogues forum was in partnership with Alzheimer’s Australia WA  with a focus on dementia. It explored what dementia means in different cultures, including looking at beliefs and values around this condition and how people are treated culturally, medicinally, and by their family and community. Following the formal part of the forum a discussion took place about the impact of culture on people’s experiences as healthcare consumers/carers in WA. Download the report here. 

Men’s Health

This Diversity Dialogues forum focused on men’s access to healthcare e.g. are men from new and emerging communities accessing adequate health care, if not, why not; what are barriers for men accessing health care in WA, are men aware of services that are available to them? Download the report here. 

2013

Health, healthcare & culture

This Diversity Dialogues forum focused on barriers to healthcare for people from new and emerging communities. The forum was a Q and A session with Stan, Safi, Joansy and others. Download the report here. 

 

 

Position Statements

Health Consumers’ Council has created these position statements to communicate our position on key issues affecting people and communities in WA.

If you have any questions about our position on these issues, please contact us on 9221 3422 or info@hconc.org.au

 

 

 

The Health Consumers’ Council Management Committee have confirmed their support for the Voice to Parliament and constitutional recognition of Aboriginal and Torres Strait Islander peoples.

Read our full statement here.

 

 

 

We stand in solidarity with the Black Lives Matter movement.

Read our full statement here.

 

 

Abortion/Termination of Pregnancy

Abortion/termination of pregnancy is a procedure that should be prescribed and undertaken by a doctor in a medical setting according to accepted protocols where the health and well-being of the women is protected. Access to termination of pregnancy should be guaranteed by statute and available in state/public health facilities. HCC welcomes WA’s adoption of safe zones ensuring protesting outside abortion clinics will no longer be allowed. WA was the final Australian jurisdiction to adopt safe zones legislation, in August 2021.

See our 2022 position statement on Roe vs Wade here

See our 2022 position statement on WA’s Abortion Reform Consultation here

Emergency Departments

Emergency Departments need to have the capacity to meet internationally agreed benchmarks for assessing and managing patients in accordance with their clinical need. Hospital systems should allow for the prompt movement of patients out of ED when it has been determined that admission is required. Emergency Departments should not hold patients for lengthy periods, without access to the comfort of family and provision for basic human needs for food, drink, access to the toilet, bed-covering and some degree of privacy.

Pain and distress for patients, and worry for family and friends, may lead to some level of agitation and aggression. This needs to be managed with understanding and compassion.

Voluntary Assisted Dying

HCC welcomes the adoption of the Voluntary Assisted Dying Act, and has been following the implementation of this Act. Individual choice, expressed through Advanced Health Directives and appointed Enduring Guardians, is a vital aspect of care of the dying.

Health data bases

The Western Australian Department of Health holds extensive data bases of health information of WA citizens. The Health Consumer’s Council acknowledges the significant resource such data bases provide for researchers into health and health service planning, in turn providing government with solid data upon which to plan for the future and respond to areas of unmet need.

The Health Consumers’ Council is of the view that the holding of this information should be conditional on:

  • The disclosure to the public of the fact that these stores of health information exist
  • Proper and rigorous scrutiny of all requests for access to the data
  • The entitlement to opt out of inclusion in a data base
  • Strong penalties for misuse and optimal security protection for the data
  • The identification of all data and respect for an individual’s privacy

Vaccination

The Health Consumers’ Council accepts that vaccination is a public good that demands some inconvenience and possible discomfort and risk for individuals, including parents and children. Ideally, all vaccination programs must be found on voluntary enlistment from the public and good information, choice and affordability. Program aspects that feature coercion or penalties should be avoided. However we recognise that in the context of the COVID-19 pandemic, especially with the advent of the Delta variant, there has been a need to mandate vaccines for certain professions. Ideally aged care and disability support workers would have been prioritised to protect this vulnerable population. HCC also asserts that there should be no fault compensation readily available where there is reasonable evidence of an adverse consequence for a person who has participated in a state-sponsored vaccination program.

Industrial Action by Health Care Workers

Any industrial action by a health professional group likely to interfere with patient care will potentially compromise the safety and quality of that care. HCC insists it is the duty of health service managers, government and representatives of workers to tell the community honestly the extent of disruptions to patient care and to make recommendations for patients and families to follow to safeguard against possible errors and oversights due to industrial action. HCC rejects the general response of managers to declare there are no risks to patient safety where direct carers are involved in industrial action. HCC would assume the role of independent rapporteur to the community on the implications for patient care during episodes of industrial action.

Patients Assisted Travel Scheme

The provision of travel and transport options and accommodation for health care purposes is a government responsibility. It is the obligation of government, where private services, public transport or community services do not provide a transport solution, to make provision for consumer access to the means to attend medical appointments. The PATS program provides some cost relief for some health consumers outside the metropolitan area; however this subsidy scheme has limited application to the diversity of needs across the state. The PATS program needs to have the capacity to assist:

  • Private patients accessing health care funded by private insurance
  • With the seeking of second opinions
  • The exercise of choice where only one clinician is available
  • With meeting a greater degree of the real cost of travel and accommodation for health care

Private Health Insurance

The Health Consumer’s Council supports private health insurance as a public good that should distribute the burden of risk and cost across the community through the current community rating system (where individuals cannot have premiums set according to their level of individual risk).

The Health Consumers’ Council recognises the enormous amount of information held by insurance companies on performance of individual clinicians, facilities and procedures and supports great disclosure and use of this information for member and community benefit.

Public to private contracting of health services

The Health Consumers’ Council believes that consumers need accessible and safe services, regardless of how these are funded. When government contracts services to private, for-profit entities, consumers as citizens have an interest in knowing that these services are being operated in a safe and cost effective way. Cost effectiveness is important because wasted funds could pay for additional services. Safety is critical and requires particular contracting provisions to ensure good clinical governance of services run for government under contract. The Health Consumers’ Council is critical of health service contracting to private-for-profit entities where the standards of reporting and disclosure of error and harm are less than those required of state services. Government contract managers must address risks inherent in private for-profit contracting and make explicit arrangements to counter these.

Retention of Royal Perth Hospital (RPH)

HCC accepts there is both community support and opposition to the retention of RPH. The decision to retain RPH conflicts with considered and deliberative long-term planning for health services in the state. The community resources and workforce required to continue operation of RPH as a tertiary facility compete directly wit those needed for the southern tertiary hospital and all other critical areas of growth in Perth. HCC supports the reversal of the decision to retain RPH as a tertiary hospital and the scaling down of the facility to provide other discrete health care services including urgent care services, a CBD primary care service and possibly an elective surgery facility.

Consumer and Community Participation in Health and Medical Research

The Health Consumers’ Council is strongly committed to the active participation of consumers, carers and community members at all stages and every level of health and medical research.

‘As the end users of health and medical research, consumers can provide valuable input to decisions about research policies and practices. If such research is to continue to provide high quality outcomes, it is important that consumer and community involvement in research and its ongoing development is facilitated. This includes participation by consumers as partners in the development of research goals, questions, strategies, methodologies and information dissemination. Research methods and results that are open to informed public scrutiny, and debate also help to ensure the integrity of research and accountability to the community for the quality of the research. Consumer and community participation in research brings with it responsibilities for consumers, community members and researchers – the responsibility to be respectful of each other’s knowledge, to share information with each other about research issues, and to be open about potential interests in the outcomes of research (such as a consumer’s individual health or the researcher’s financial benefits from a funder). The shared responsibility of consumers, community members and researchers is to ensure that ethical requirements are met and that there is value to the research.’

National Health and Medical Research Council Consumer and Community Participation Resource December 2004 Adopted: February 2011

Resources

This page links you to key resources HCC have developed or partnered to develop.

HCC WA  eNews

Brochures

Blog

Recordings

Information about the WA Health System

Patient First

Care Opinion FAQs

My Health Record

Procedure Specific information Sheets

Self-managing your chronic condition

People living with disabilities (Empowering Consumers Living with a Disability)

Engagement in the Alcohol and Other Drugs Sector

My Baby WA Pregnancy App

Health Matters Magazine (discontinued Dec 2020)

COVID-19 (2023/2024)

COVID in WA

COVID-19 continues to be a health issue of concern to many health consumers. Below, we provide links to the Federal and State Government websites as these have the most up to date information. We also provide a link to OzSage, a network of Australian experts from a broad range of sectors relevant to the well-being of the Australian population.

We can all stay well by choosing to stay ahead of COVID-19. Choose to stay safe by:

  • wearing a mask in indoor settings
  • getting together in well-ventilated spaces
  • staying up to date with vaccinations

Advice on what to do if you have COVID-19, or are a close contact of someone who has COVID-19

Information and advice on COVID-19 for the community and businesses in WA

Information on testing, what to do if you have COVID-19, staying safe, and vaccinations

Translated information and advice on COVID-19 for the community and businesses in WA

Australian Government Resources

Learn about the COVID-19 disease, symptoms and effects

COVID-19 vaccines are recommended for everyone 5 years and older. Find out more about getting vaccinated

Learn about long COVID and where to get help for ongoing symptoms

Other Resources

Resources and independent advice for federal and state governments, opposition, business, community and non-government agencies in Australia, from a multi-disciplinary network of Australian experts from a broad range of sectors relevant to the well-being of the Australian population during and after the COVID- 19 pandemic.


Advocating for Consumers

Since the pandemic began, HCC has been actively advocating for consumers’ needs.

In 2024, while news of COVID infections may occur less frequently in the media, we know that COVID remains a concern for medically vulnerable people and the community at large. Community infection rates fluctuate as new variations and waves occur, and evidence about the impact of Long COVID and multiple infections is still emerging. This leaves many in the community concerned about whether WA is doing enough to manage the risk of serious illness or widespread infection.

Now that we are living with COVID, our advocacy continues for:

  • Clear, accessible information about how we can protect ourselves and our loved ones
  • Clear, accessible information for people who are at increased risk of severe disease from COVID, including people who are immuno-compromised
  • Access to low/no-cost protection measures for people at increased risk of severe disease including respirators, anti-virals, and vaccinations

We raise these issues with decision makers at the state and Federal Departments of Health – see our updates below for more on this.

Community Conversations

We know that many people value the opportunity to hear the latest information about the ongoing impacts of COVID, and how to protect ourselves. HCC regularly holds Community Conversations with senior health leaders to provide the latest information and answer your questions.

More information on upcoming Community Conversations can be found on our events page.

Recordings of previous Community Conversations are available on YouTube.

Health Consumers’ Council Updates

December 2023: Advocating for consumer rights as we live with COVID

November/December 2023: COVID Health Consumer Sentiments

November 2023: COVID health protections in hospitals

[Last updated February 2024]

Advocating for consumer rights as we live with COVID

We recently held another in our series of Consumer Conversations in relation to COVID. On 12 December 2023, consumers had the opportunity to hear from Dr Andy Robertson, WA Health’s Chief Health Officer.

Based on that discussion, and the questions raised before and after, we have today sent a briefing of consumer sentiments about COVID to WA Health leaders, including the Director General, and the Chief Executives of the Health Service Providers.

You can read this briefing here: COVID Health Consumer sentiments HCC December 2023

We know that many people remain concerned about COVID, and are concerned at the lack of awareness in the general population of the risks that COVID still poses.

In 2024, we are planning to host further community updates with health leaders to help inform the community about this important health issue.

To subscribe for updates to receive information about these events, sign up to our enews here https://www.hconc.org.au/resources/enews/ or follow us on Facebook https://www.facebook.com/hconcwa

Clare Mullen, Executive Director, December 2023

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

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

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