Category: Blog

In the last 30 years, HCC has championed and supported thousands of people to assert their rights, have their say, and influence health service delivery. As we continue to celebrate our 30^th anniversary this year, we’re reflecting on some of the key achievements in this space.

Here are some of the health consumer and health advocate highlights of the 2000s:

• HCC co-sponsors a Clinical Senate Debate on ‘WA Health Consumer and Community Engagement Framework: For Health Services, Hospitals and WA Health’. HCC has a permanent position on the Clinical Senate Executive Committee.
• HCC participates in the International Alliance of Patient Organizations Conference in Barcelona.
• HCC participated in the first Australasian Patients for Patient Safety Workshop. This resulted in the publication of the Perth Declaration for Patient Safety.
• The Patient First booklet and other resources are developed in consultation with consumers and distributed to hospitals across the state.
• HCC develops a lobbying kit to involve all our members in reforming the 1894 Medical Act, and later rallied at Parliament House for Medical Act Reform.
• HCC is funded to establish consumer based groups in rural WA. The Esperance Health Issues Group was formed, providing feedback on a range of health services in the Shire. The Quality Rural Project and establish a sustainable consumer aims to develop and establish a sustainable consumer participation plan in at least four rural and remote centres in WA. The initial target areas as Bunbury, Geraldton, Exmouth, Port Hedland and Albany.
• The Aboriginal Consumer Participation & Complaints Review Project began in 2007, then became the Aboriginal Advocacy Program. Funding for this program ended in 2016.

Download the PDF version of the timeline image here.

By Tania Harris – Mum, and Health Consumers’ Council Engagement Manager

Sepsis is a life-threatening condition that happens when the body’s response to an infection damages its own tissues and organs. Sepsis is preventable, but when it does happen it is a serious medical emergency that without rapid treatment can result in disability or death.

Any infection can lead to Sepsis, and anyone can get it. There is an increased risk for very young children, elderly people and people with chronic illness.

In Australia, over 55 thousand people are diagnosed with Sepsis every year, and more than 8,700 people will lose their lives to this condition.

I had been working at Health Consumers’ Council for a year when my daughter contracted Sepsis after a surgery, and since then I have been passionate about raising the awareness of this condition, in the hope that more awareness in community will mean less people losing their lives to Sepsis.

Tuesday 28^th February 2017, I didn’t know anything about Sepsis, other than it was a “thing”, an over enthusiastic infection. By mid-morning Wednesday 1^st March 2017 I had a horrible realisation that it might take her from us.

Lisa has Cerebral Palsy, hospitals and hospital wards were nothing new for us – she had been in and out for her whole life. Many surgeries and stays, and when she was 16 Lisa had had a feeding PEG inserted at an adult tertiary hospital in Perth. This was her (our) first experience in an adult hospital. On reading my Facebook posts on the procedure, it all went well, and I was very happy with the service we got at the hospital.  My post on the 21^st February 2017 to a Facebook group of parents and people with disability says:

“So, our Lisa is in RPH [Royal Perth Hospital] getting a PEG in. First time adult hospital and only second time in a place other than PMH [Princess Margaret Hospital for Children]. Gotta say, I am impressed. They are taking really good care of her and sorted the few issues there was around me staying, really quickly. Not once has a nurse not talked to Lisa first, they are listening and investigating when I am saying she seems off, the assumption seems to be that Lisa understands and I have a clue.”

A week later I got a phone call from the nurse at Lisa’s school asking permission to give her some Panadol, she was a bit warm and unsettled. By the time I got home around 5pm she still had a temp and had started vomiting. I did what I usually would do when she was unwell, Panadol and a shower. She was very quiet, and the shower didn’t seem to make her feel any better. So, I did what so many of us do, I reached out to other mums and to nursing friends. I called the hospital where the PEG was inserted. We went through symptoms, we talked about the PEG, it looked good. But I still had this feeling it was the PEG – it didn’t make sense it was anything else.

In my experience, for people and parents of people with disability and chronic health concerns, seeking medical intervention isn’t done lightly. So, when it happens, it’s serious. I called a dial a doctor, who thankfully was on his way past to somewhere else and dropped in. Lisa’s temp was then at 39 and she was looking unwell. He called an ambulance and by the time it arrived her temp had gone up to 41 and she looked worse. Lisa doesn’t use spoken language, but she is generally not a quiet girl, but she was so quiet that night.

At some point during that night, it became clear Lisa was very unwell, but I never heard the word “Sepsis”. The PEG wasn’t identified as an issue. My sister-in-law, at the time an ED nurse in a regional hospital, asked me what certain readings were and if certain tests had been ordered, and suggested I get my husband to come in. All signs were pointing to Sepsis, but I didn’t know any of them.

It turns out the PEG was the culprit, when the doctor inserted the PEG they went through part of the colon which was in an unexpected place because Lisa is in a wheelchair and her organs aren’t always in the same place as they might be for other people. A slow leak from her colon over a week had led to Sepsis.

Lisa spent almost a year in and out of hospital with recurrent infections, feeding tube issues, general unwellness. She has a massive scar on her chest and abdomen as a result of the required bowel resection and she still hates going to RPH 7 years later, but she – and we, are one of the lucky ones.

We were able to get medical attention for Lisa fast – from the dial a doctor, to the ambulance to the ED. Most importantly, all of those medical professionals listened to me and took my concerns seriously. It isn’t hard to imagine what would have happened if they hadn’t.

On Friday 13^th September 2024 (World Sepsis Day), Child and Adolescent Health Service and the Department of Health WA is hosting the inaugural WA Sepsis Grand Round. This event will highlight pediatric, adult and maternal Sepsis.

This free event is being held at Perth Children’s Hospital and online, and an event highlight is the Clinician Panel, chaired by consumers and asking questions about Sepsis that matter to patients. I am very proud to be co-chairing with Leana and Tim.

The event runs from 9:30am – 3:30pm and is being hosted from the PCH Auditorium.

WA Sepsis Grand Round Tickets, Fri, Sep 13, 2024 at 9:30 AM | Eventbrite

You can book your place at the Eventbrite link, and attend either online or in person.

By Tania Harris, Engagement Manager, Aboriginal and Disability Engagement Lead

The Art of Respectful Recognition

An Acknowledgement of Country is a gesture of deep respect that reflects the oldest continuous culture in the world. When crafted thoughtfully, it becomes a profound statement of recognition and respect for Aboriginal and Torres Strait Islander peoples’ connection to their land.

• It is essential to acknowledge the Traditional Owners of the land and to pay respect to their Elders past and present.
• While short, a meaningful Acknowledgment of Country can be powerful, reminding us of the rich cultural heritage that predates modern Australia.

Guidelines for an Authentic Acknowledgement

Crafting an Acknowledgement of Country that is both respectful and personalised will allow for a moment of reflection and connection.

Start with the basic acknowledgment of the Traditional Owners and Elders. Build upon this foundation to include recognition of the significance of the land and the ongoing cultural connection.

Creativity in Acknowledging Country

Acknowledgements can be delivered creatively while still maintaining the essence of respect and recognition. Whether recorded as a video or expressed through an art project, these gestures can be personalised and shared in various settings.

• At home, record or share a photo or video expressing your Acknowledgment, perhaps with family or friends.
• In the workplace, create video messages or photo displays that represent your organisation’s commitment to respecting Country.

The Pitfalls of Tokenism

A meaningful Acknowledgement of Country should be more than a checkbox exercise. It should not feel tokenistic, nor should it be used to overshadow the essential work of self-reflection, truth-telling, anti-racism, genuine partnership, and inclusion.

• Ensure that the acknowledgment is given the time and space it deserves, rather than being rushed through.
• Reflect on the deeper meaning behind the words and allow for a moment of consideration for the audience and yourself.

Beyond the Basics: Personalising Your Acknowledgement

There are many ways to craft an Acknowledgement of Country but personalising it to your context can make it more impactful.

Consider beginning with the traditional Acknowledgment and adding a personal reflection or commitment related to reconciliation and respect.

Tailor the language to suit your audience, whether they are healthcare professionals, community members, or corporate stakeholders.

Acknowledgment as a Commitment

An Acknowledgment of Country is a clear expression of your commitment to recognising the importance of Aboriginal and Torres Strait Islander cultures. It’s a commitment that should be carried out with deliberation and sincerity.

Embrace Cultural Protocols: Acknowledging Country Workshops

Every day we live, work, and dream on Aboriginal and Torres Strait Islander lands. Take a moment to acknowledge this connection by crafting a meaningful Acknowledgement of Country. Join one of our Acknowledging Country workshops to deepen your understanding and respect for these cultural protocols.

Think about how you can incorporate a thoughtful and respectful Acknowledgment of Country into your daily practices and events. Reflect on the cultural significance of the lands you inhabit and take the next step to honour this heritage by attending a workshop that will enrich your acknowledgment practices.

In the last 30 years, HCC has championed and supported thousands of people to assert their rights, have their say, and influence health service delivery. As we continue to celebrate our 30^th anniversary this year, we’re reflecting on some of the key achievements in this space.

Here are some of the health consumer and health advocate highlights of the 1990s:

• HCC launched on World Health Day (7 April) 1994 as the independent “voice” on health policy, planning and decision making.
• HCC campaigned strongly for the passing of the Health Services (Conciliation and Review) Bill 1994. This included circulating a lobbying kit to all HCC members encouraging them to make contact with and discuss the Bill with their local Member of Parliament. The Bill sought to establish an independent Health Complaints `Unit – which HCC was a strong supporter of. The Bill was passed in 1995 and This included the establishment of the Office of Health Review – which later became the Health and Disability Services Complaints Office as it’s known today.
• Community Advisory Councils are established in the Perth metropolitan area to encourage consumer participation and improve the customer service/patient focus of the hospital/health service.
• Prompted by the HCC Executive Director Michele Kosky, Professor D’Arcy Holman appoints the first consumer rep to UWA data linkage project.
• With a $50k grant from DoHWA, HCC organised the first WA complaints conference. The “For Crying Out Loud” conference took place in August 1999 and was attended by about 200 people.
• HCC and the Cystic Fibrosis Association establish the Chronic Illness Alliance “to identify critical issues impacting on the lives of people with chronic illness and to work together to respond to chronic illness issues”.

Download the PDF version of the timeline image here.

By Clare Mullen, Executive Director 

As I write this in Perth we are deep in the Noongar season of Makuru which is the coldest and wettest time of the year in the south west of WA. It’s hard to believe that only a week ago I was waking to warmth and sun as I spent a few days in and around Kununurra on the land of the Mirriwoong and Gajerrong people in the East Kimberley. It was my first visit to the region, but it won’t be my last!

I was there because I’ve set myself a goal of visiting more of this beautiful state because through this job I’m often in the situation where I’m representing the whole of the WA community. Early in my time in WA, I had the opportunity to travel to Meekatharra, Wiluna, and Geraldton to learn about people’s experiences of accessing maternity care. This was my first exposure to the WA country and what I saw and learned then has stayed with me since. I’m keen to deepen my understanding of the reality of people’s experiences accessing healthcare and achieving their health goals across this vast landmass.

HCC doesn’t yet have a budget for these kind of exploratory trips, and so I’m incorporating a few work-related meetings into my holiday. (I’m a big fan of community events like Agricultural Shows so if you know of any community activities that are happening that I could coincide a trip with in your region, please let me know!)

I’ve returned from the East Kimberley re-energised to continue to champion and amplify the voices of consumers and community members living in that region, as well as with a new appreciation of the reality of delivering healthcare in that regional setting.

Clare, Rose and Reggie at the Kununurra Hospital

When I was there I met with Maxine, the Chair of the District Health Advisory Council (DHACs are the consumer committees in the WA Country Health Service) and I learned a bit about some of the local health issues. Maxine also volunteers at the Wyndham Museum, so I took the opportunity to visit and drove there from Kununurra – a 2 hour round trip which many people in Wyndham need to do if they need inpatient care, which is accessed at Kununurra Hospital. I learned a bit about the reality of accessing healthcare in a community with a relatively small population – there are just under 1,000 residents in Wyndham – and the practical challenges faced by people who may be trying to access healthcare 100km away from home with no public transport. And that’s not even talking about when people have to travel to the metro area for specialist care!

Still in Wyndham, I met with James Gibson, CEO of the Ngnowar Aerwah Aboriginal Corporation. As well as convincing me that I need to visit the region in the wet season to really appreciate its beauty, James outlined the experiences of Aboriginal people in Wyndham and the surrounding areas when trying to access culturally safe healthcare. We also discussed the broader issue of culturally safe care across all health services, including the importance of individual advocacy. Ngnowar Aerwah already do a lot of advocacy for the people who use their services, and HCC is keen to extend the availability of our Individual Advocacy to more parts of the state, so there may be opportunities for us to work together.

Back in Kununurra, I met with Maria and Kylie at the Majarlin Kimberley Centre for Remote Health, Mary at the Ord Valley Aboriginal Health Service, and Dale, Jo and the team at WA Country Health Service – East Kimberley.

Clare, Maria and Kylie

From these discussions I’ve come away with a better sense of some of the local health issues, including:

• The fierce passion and commitment that everyone working in the region has to delivering great care for the people of the East Kimberley
• The practical challenges of navigating the Patient Assisted Travel Scheme (PATS) and how the logistics of travelling to the metro area can impact negatively on people’s experience of healthcare
• The challenges of providing palliative care across a huge geographical area with a small population
• The pressures on volunteers and community leaders in a small community where multiple demands can make it difficult for people to be involved in every opportunity that comes up
• The importance of ensuring a variety of mechanisms for gathering and responding to consumer feedback that enable people who may not respond to “standard” approaches to still have a say in health.

I had timed my trip to coincide with the Kununurra Agricultural Show and on the flight up to Kununurra I had the good fortune to be seated next to Owen from Regional Men’s Health. He was heading to Kununurra as they had a stand at the show, something they do regularly in the East Kimberley and elsewhere.

In amongst these work meetings I also had plenty of down time – including swimming in the vast waters of Lake Argyle, taking in the awesome (in the true meaning of the word) landscapes, and just sitting in the peace of Mirima National Park, surrounded by the spectacular rock formations while listening to the birds.

I feel very privileged to live and work in WA and I’m looking forward to exploring more of it.

Clare and James Gibson

By Tania Harris, Engagement Manager, Aboriginal and Disability Engagement Lead

A Gesture That Gives Back

When professionals and organisations take part in Health Consumers’ Council’s Acknowledging Country workshops, they’re not just learning to honour the traditional custodians of the land. They’re also contributing to a bigger cause that supports Aboriginal health consumers in Western Australia.

• Proceeds from these workshops are quarantined and used solely for supporting Aboriginal health consumer initiatives.
• The funds go towards training scholarships for Aboriginal consumer representatives, covering participation payments, and establishing an Aboriginal Consumer and Community Advisory Committee for Health Consumers’ Council.

Empowering Through Education

The Acknowledging Country workshops are intentionally kept to small numbers to allow for an immersive and personalised experience. This approach ensures that participants can practice delivering an Acknowledgement of Country, receive immediate feedback, and have something meaningful they can use right away.

• Beyond the workshop, participants are provided with resources for a continuous learning journey.
• HCC is committed to using the proceeds to further the cause of Aboriginal health consumers, fostering a cycle of empowerment and respect.

An Ongoing Commitment to Aboriginal Health

By attending the workshops, you’re making a tangible contribution to the health and wellbeing of Aboriginal people and communities.

• The funds contribute to initiatives where Aboriginal perspectives are needed but may not be otherwise funded.
• By investing in the continuous learning of Aboriginal consumer representatives, we’re ensuring their crucial voices are heard in healthcare decisions.

A Workshop That Makes a Difference

The Acknowledging Country workshops go beyond cultural training; they’re an investment in the future of Aboriginal health and a step towards closing the gap in health outcomes between Indigenous and non-Indigenous Australians.

Make an Impact

Booking an Acknowledging Country workshop is not just a step towards reconciliation, but also a constructive way to give back to the communities we serve.

Book now for one of our available dates, or make an enquiry about a group booking for your organisation, and make a commitment to both your personal growth and the health equity of Aboriginal communities.