Category: Blog

COVID health protections in hospitals – return to masks

Posted on November 17, 2023

Health Consumers’ Council welcomes today’s announcement by the WA Department of Health that WA public hospitals will be strengthening health protections in light of an increase in COVID-19 infections.

We know that COVID has remained a concern for medically vulnerable people and the community at large. And with regular media reports of rising infection numbers, and evidence about the impact of Long COVID still emerging, many in the community may be concerned about whether we’re doing enough to manage the risk of serious illness or widespread infection.

HCC will be hosting a Community Conversation for health consumers where attendees will hear directly from Dr Andy Robertson, WA Health’s Chief Health Officer, and get the facts on the latest wave on Tuesday 12 December at 1pm.

Children's building blocks with UPDATE COVID19 spelled out - and title of the event

The Voice to Parliament – a health consumer lens

Posted on October 6, 2023

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

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

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

 

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 

Righting injustices won’t be easy – Disability Royal Commission report

Posted on September 29, 2023

People with disability have advocated strongly for this day

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

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

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

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

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

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

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

By Clare Mullen, Executive Director, September 2023

Consumer and carer representative awarded Honorary Fellowship at RACP

Posted on September 28, 2023

Health Consumers’ Council (HCC) would like to congratulate consumer and carer representative Debra Letica, whose ongoing commitment to improving health services for all West Australians was recently recognised when the Board of the Royal Australasian College of Physicians (RACP) resolved to admit her as an Honorary Fellow of the College.

Deb was a sibling carer for her brother, who was born with a brain injury, and advocated for him to get the best care he could get to help him enjoy the things that brought him joy and happiness. When she came across the opportunity to join the Rockingham Hospital Community Advisory Group as a carer representative she thought “nothing ventured, nothing gained” and put in her application.

From there, Deb joined HCC’s Introduction to Consumer Representation workshop, and then sought out opportunities to continue educating herself on everything health.

“I was pretty nervous way back in those early days. I was not confident as a public speaker, and I must say, a little wary of health professionals, mostly because my interaction as a carer had been anything but pleasant with a few of them. But my confidence grew, the more I joined in with the Rockingham General Hospital Consumer Advisory Group and sat on other committees, I learned a great deal about how the system worked. And I met some really nice people. And they changed my perspective about the health system,” Deb said.

In 2018, Deb became an inaugural member of the Royal Australasian College of Physicians Consumer Advisory Group.

“I became really interested in the training of health professionals, because I didn’t know what it took, what they had to do, to become a health professional. They’ve shared their wisdom and knowledge  with me, and asked me for mine on various committees across the college. They’ve helped me present at the College Congress, which is held every year. I’ve learned an awful lot about the passion health professionals have, the commitment they have to becoming a physician or a specialist. They’re all amazing, incredible, beautiful human beings and what they do, and achieve, leaves me in total awe. It certainly has opened my eyes.”

Deb was recently on a Zoom call as part of a HCC workshop when she received an email from the President of the RACP, advising that the Board had resolved to admit her as an Honorary Fellow of the College.

“I couldn’t quite believe it! I burst into tears, but tears of joy. I’m very honoured and humbled that my volunteer work as a consumer and carer has been recognised in this way. And it’s commendable that the RACP so highly value consumers and carers voices in the training of the physicians and specialists of the future. I think this recognition is having a really positive effect, not only for me, but for many of my consumer and carer colleagues and friends across Australia. It certainly sets the bar for the value and the recognition of our consumer voices.

The fellowship is a very clear example of the value that is placed on consumers and carers lived experience voices. And I know that we have healthcare rights, and we have the national standards, but we have to go beyond that to be kind and seek opportunities to understand how it is for other people working in the system.

I think everyone has a story that can add value, so that we can all learn from and make the system better for the next generation. By this I mean to also include the stories of those working in the system, and how we can work together to improve the system. Wouldn’t it be wonderful if somehow we can create a platform to share our stories, and by that, I mean, all of us, those of us using the system, and those of us working in the system. I really think this would change our hearts and minds and give us a deeper understanding of how things are in each other’s world.

One of the important things for me, is that as consumers, we have to be brave to listen to others, to the stories of those working in the system. Because we are in this together. And we have to be on the same boat rowing the same way.

I strongly think that we need to encourage and support others to be brave enough to get involved. We need to have a more diverse group of people, more diverse voices, sharing their stories – and support from places likes HCC to help everyday people like me to have the courage to be brave enough to take on these opportunities.”

On behalf of all the team at HCC, congratulations Deb – this honour is so deeply deserved. Thank you for your passion and dedication to speaking up for the importance of a kind, patient-centred health care system.

A Tribute to Kate Moore

Posted on September 18, 2023

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

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

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

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

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

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

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

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

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

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

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

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!