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eNews
22 July 21
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HCQ’s CEO, Melissa Fox, dining with the members of the Health Consumers Collaborative of Queensland in June after meeting to discuss system priorities, equity for First Nations and patient safety and quality.
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I’m delighted to welcome all the new members who have joined our network this year and introduce our Winter eNews which celebrates the incredible work carried out by consumers, carers and health staff, and the team here at Health Consumers Queensland since the end of March, to create a better, fairer and equitable health system for all Queenslanders.
We’ve developed quite a reputation for pivoting in the face of COVID-19 and we were proud to bring you the latest in best practice and thinking from both sides of consumer partnerships at our re-imagined Annual Forum, Sharing Power: Co-design with consumers for impact and equity, via HCQ TV at the end of May.
Congratulations also to our Youth Reference Group who were finally able to get together face to face in Brisbane for our first Youth Forum where Dr John Wakefield, Director General, Queensland Health, launched the Health Consumers Queensland Youth Engagement Framework to ensure the voices of young people are amplified effectively throughout our health system.
During the past six months, 370 consumers and carers participated in Kitchen Table Discussions on a number of projects including High Benefit Care at the End-of-Life, and consultation was also undertaken with 112 prisoners on their experience of health care services.
We are particularly delighted to announce the launch of Queensland Health’s Inform my Care website which we worked on with over 300 consumers for nearly three years. Watch out for an upcoming invitation to a Consumer Conversation when we’ll be taking you on a detailed tour of the site and learning more about what you think of Australia’s first and only transparent health care comparison site.
Much of my work continues to focus on making sure that all consumers’ voices remain at the centre of the health system’s response to COVID-19, and particularly in delivering a safe, well-managed and person-centred vaccination program for all Queenslanders whether or not you are choosing to have the vaccine. Check out our issues papers to find out more.
I also discussed our over-arching role in systems advocacy when HCQ Board Chair, Dr Erin Evans and I met with Queensland’s new Health Minister, Yvette D’Ath MP earlier in July. We are looking forward to working with the Minister and her team to ensure what consumers want drives the pandemic response, delivery of care and reform of the health system.
Finally, we pay tribute to a modest man who was a fierce consumer representative and champion, Noel Muller. His passing has reminded us once again that so many members of our network who give so much of their time, energy and power to make the health system better for us all are also living with chronic, debilitating or life-limiting conditions and illnesses. We would like to express our gratitude to Noel and dedicate this eNews to all the consumers and carers who give so much to make a positive difference to other people’s lives.
Yours in partnership
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Melissa Fox
CEO, Heath Consumers Queensland
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HCQ TV re-energises consumers, carers and health staff to take the next steps to sharing decision-making power
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Dr Alex Markwell joins consumers Peter Tully, Jim Madden and John Anderson for the first episode of HCQ TV: Consumer Partnerships going digital - bridge or barrier, hosted by HCQ's CEO, Melissa Fox.
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Thank you to everyone who tuned in to HCQ TV, our inaugural webcast series: Sharing Power: Co-design with consumers for impact and equity during 25 May – 3 June. 675 viewers and counting!
Our Annual Forums are renowned for bringing together expertise across consumer partnerships. Whilst we could not meet face-to-face this year, we were delighted to still be able to bring you together with 18 expert panelists including inspiring consumer and carer representatives, staff from HCQ, Queensland Health and NGOs to discuss four key issues which influence what it takes to truly share decision-making power:
- Consumer Partnerships Going Digital: Bridge or Barrier?
- Sharing Power: Showcasing successful consumer-led co-design
- Why do you think I’m hard to reach?
- Value based health care – What it means for all of us
We believe impactful consumer partnerships are based on a shared vision, trust, and empowering consumers to shape health services. That’s why you can still watch each episode on our website and continue to develop your knowledge, skills and awareness to build a health system that is fair, equitable and meets the needs of the people who use the system and those who serve it.
One viewer told us: "Listening to you today has really stoked the fire for me and I am re-energized to work my butt off." This response fills us with confidence and hope because now more than ever, decision-makers need to have the skills, willingness, energy and courage to work shoulder-to-shoulder with consumers and make some difficult decisions as the economic consequences of COVID-19 become clearer.
Once again, we’d like to thank: all our panelists; Queensland Health for their sponsorship and support; Queensland Health Director General, Dr John Wakefield; our event partners, Iceberg Events; Select Audio Visual and the team & Board at Health Consumers Queensland - especially Engagement Advisor, Suzanne Wirges, who produced this event.
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HCQ welcomes our new Consumer Advisory Group members
We are delighted to welcome Breanna Medcalfe, Christos Papadopoulos, Sharon Were, Jordan Frith and Michelle King to our Consumer Advisory Group.
The Consumer Advisory Group (CAG) enables consumers and carers to partner with HCQ to inform its work to ensure that it is a consumer-driven and led organisation as well as developing, supporting and mentoring current and emerging consumer leaders.
The new members join existing members: Adele Witte, Lila Pratap, Rebecca Waqanikalou (Chair) and Tanya Kretschmann.
We would like to thank the members who have stepped down this year: Helen Mees who was the former Chair, Satrio (Tiko) Nindyo Istiko and Gary Hondow for their hard work, energy, valuable insights and commitment to supporting our work.
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Finding solutions for the communication and roll-out of the COVID-19 vaccine
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Reference group members: Bronwyn Smith, Julie Rogers, Maureen Woodward, Patrice Harald, Lynda Maybanks (Project Consultant, First Nations COVID-19 Engagement) and Ayeesha Allen. (Rebecca Glancy joined on-line but not in photo.)
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The reference group for the Amplifying the voices of Aboriginal and Torres Strait Islander consumers Project, met face to face in Brisbane in June. At the solutions-based workshop, the consumers built on the discussions had in yarning circles and two earlier live Q&A sessions, to identify key themes around communication and the roll-out of the COVID-19 vaccination program in Queensland.
The group met at Kuril Dhargun at the State Library of Queensland and during the meal break, representatives from the Department of Health came and met the consumers and discussed the key themes that had emerged to date. These will soon be summarised and shared with all on our website. In the meantime, a mid-project update can be read here.
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A tribute to Noel Muller
Many of you knew Noel as a fellow member of HCQ’s consumer network and we are sad to share the news that he passed away on 20 April 2021.
Noel was an active, dedicated and inclusive health consumer representative who made a valuable contribution to improving our public health care system whilst championing other health consumers and ensuring that their voices were heard – right up until a few days before his death.
He was the first consumer representative appointed at the Royal Brisbane and Women's Hospital in 2012. He was held in such high regard by the hospital that their Executive committee honoured him with a standing ovation at the Executive Meeting when he relayed the distressing news that he was nearing the end of his life. You can read the beautiful tribute from all the staff at the hospital here.
Since joining HCQ’s consumer network he continued to share his views and experience as well as ensuring the consumer voice was heard in response to the handling of COVID-19 here in Queensland.
Never one to mince his words, he always fiercely pushed to make sure the discussions included every consumer at the table - and particularly the voices of women. He was frequently heard to ask, "Have you thought of this?" or "What about someone with..."
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Supporting consumers to make better informed decisions about their health care
Making decisions about health care is a daunting prospect for many. But this is set to become easier now that Queensland Health has adopted a set of communications principles which will underpin a new approach to support value based health care and consumer decision-making. These principles are the key outcome of the Helping Consumers with Decisions project which Health Consumers Queensland undertook for the Strategic Communications Branch earlier this year.
During the project, we heard from consumers across the State and HHS engagement staff who strongly endorsed the need for:
- a consistent, strategic, state-wide approach to the development and promotion of decision-making resources
- consumer-friendly accessible design
- communication tactics that support decision-making at every stage of the patient journey
- content that answers why, how and when to ask questions to support consumer healthcare decisions
- information on next steps or where to go for more information
- support and information for healthcare professionals
- reviewing new decision-making resources or content with consumers to make sure they meet their needs, are engaging and follow the WHO communication principles.
The Strategic Communications Branch has now put together this factsheet which recognises the importance of decision-making tools, the need to raise awareness of them across the State, and the support and engagement required to ensure their effectiveness, uptake and usage. Consumer representatives can use this information to encourage their health service to adopt the Principles.
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Celebrating new consumer partnerships
Congratulations to consumers and carers from HCQ's network who have been successful in applying for consumer partnership roles across many specialisms and levels of the system since April 2021.
Two of Queensland Health’s strategic, high level Tier 2 committees - the First Nations Health Advisory Committee and the System Information Communication Technologies Advisory Committee have each recently appointed a consumer. These ground-breaking appointments now mean that every Tier 2 committee now has a consumer or carer member sitting on it.
Two consumers and carer representatives have been appointed to each of the following Committees, consultations and working groups:
- Queensland Health’s Telehealth Sub-Committee
- Jacaranda Place, Brisbane’s Adolescent Extended Treatment Centre’s Stakeholder Committee
- Mental Health Community Support Services Evaluation Steering Committee
- Steering Committee for the Commonwealth funded Improving health services for people with brain and spinal cord injuries project (the Statewide BaSCI project)
- Clinical Excellence Queensland’s Statewide Maternity Clinical Network
- Plans for a National Mutual Recognition Project to recognise civil involuntary mental health orders
- A planned statewide Endoscopy survey.
35 members of the network applied for these opportunities and we thank you all for the time and effort you put into each application. There are many reasons why particular consumers or carers are selected for roles and we encourage you to continue applying.
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New Inform my Care website enables consumers to compare health services in a Queensland first
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Watch the ABC press conference featuring Health Minister Yvette D'Ath MP, HCQ CEO Melissa Fox and consumer representative Noela Baglot (shown above) at the launch of Inform My Care at Parliament House in Brisbane on Friday, 18 June 2021.
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Health Consumers Queensland is delighted to announce the launch of The Inform My Care website.
We are proud that this shift towards greater transparency has happened in Queensland, with Queenslanders, for Queenslanders. Queenslanders are the first and only people in Australia who can now compare services available at both public and private health facilities and residential aged care facilities (including maternity models of care) in one place. We can compare staffing ratios, hospital acquired complications, wait times, patient reported outcomes and more.
The project is one of the best examples of co-design that HCQ has seen and had the privilege of being involved in. Over the last three years, HCQ have supported almost 300 diverse consumers from across Queensland to be engaged with Queensland Health throughout the life of this project, through three rounds of kitchen table discussions and 12 focus groups. In addition, consumers have taken part in co-design sessions, consumer website testing, and language reviews of the website content. We’d like to particularly acknowledge the contribution of Lorraine Sing-Cutler, Adele Witte and Noela Baglot for their consumer representation on the Inform My Care working group. To date, Adele and Noela are still members of the working group.
We acknowledge the hard work of every single consumer, as well as Anne Curtis, our Engagement Consultant – Specific Projects and Kirstine Sketcher-Baker, Executive Director of the Patient Safety Unit with Clinical Excellence Queensland, who facilitated this end-to-end best practice engagement.
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The power of youth engagement
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Members of HCQ's Youth Reference Group celebrate the launch of HCQ's Youth Engagement Framework 2021: Amplifying the Youth Voice, with the Director General, Queensland Health, Dr John Wakefield and Chief Executive of Children's Health Queensland, Frank Tracey, and HCQ staff and Board.
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On Friday 14 May, HCQ’s Youth Reference Group celebrated the launch of HCQ’s Youth Engagement Framework 2021: Amplifying the Youth Voice at our long awaited and eagerly anticipated Youth Health Forum in Brisbane.
It was wonderful to finally meet so many of the dedicated and inspirational young people on our Youth Reference Group in person and online. We thank you all for your input in shaping this project as well as those who shared their story. We’d also like to thank all the stakeholders involved in the co-design of this Framework and the many stakeholders involved in the Framework Actions.
The Framework is a starting point for improving and increasing engagement of young health consumers in the Queensland health system and beyond with the aim of developing better health services for young people and a health ecosystem that values the voice and involvement of young people. This will create opportunities for young people to get involved and build the capacity of health staff across Queensland to engage with young people.
Lachlan, a member of the Youth Reference Group, reflected on the day: “It was so nice to have met both Dr John Wakefield, the Director General, Queensland Health and Frank Tracey, Chief Executive of Children’s Health Queensland on Friday and to feel heard. You gave us young people a voice and made a commitment to amplify and sustain it. As young people, we’re endeavouring to help support and improve our healthcare community. Many of us in that room have an unspoken bond and common experience, it’s that passion that motivates us to stay involved and help create something better."
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Young consumers present to Queensland Health’s Senior Leadership Forum
Health Consumers Queensland’s Youth Reference Group (YRG) have set a new bar for engagement after their presentation to Queensland Health’s Senior Leadership Forum (SLF) which is chaired by Dr John Wakefield, Director General, received enthusiastic support from Chief Executives and Deputy Director-Generals right across the system.
Anja, one of the YRG members explains: “Breanna, Lachlan and I had the honour of presenting to the Queensland Health Senior Leadership Forum on 13th July to encourage investment and commitment into amplifying the youth voice across Queensland. We presented the work of the Youth Reference Group (YRG) which has worked collaboratively to develop the Youth Engagement Framework. We highlighted distinct pain points identified through our consultations and lived experience to take the SLF on a journey through what it is like to experience the health system as a young person. We look forward to the statewide commitment from hospital and health services to work alongside HCQ and the inaugural Youth Executive Committee to create a health system that is responsive to the needs of young people - nothing about us without us.
Before the Forum, John said, “This will be an opportunity to tell the executives ‘what’s in it for them’ – ie. as they grapple with rising demand and funding constraints, how will this engagement help them deliver better services for young people within a constrained funding envelope. They have to believe that this is going to help them achieve their performance goals”.
Breanna added, “I believe that we as young health consumers are the best advocates for ourselves and others who may not have the courage or ability to speak up. The only way we can implement change is by sharing our experiences and collaborating with like-minded others to engage other consumers in recognising the mental and physical challenges this age group faces when accessing our health care system.”
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Building your skills and knowledge to partner successfully
244 new, emerging and experienced consumers, carers and health professionals are now equipped take their consumer partnerships to the next level after taking part in 18 training sessions which included advanced masterclasses, intermediate or introductory courses and lunch time sessions between April and June this year.
Designed and run by HCQ’s Engagement Advisor, Reema Naresh, our role in providing consumer training is to empower and enable consumers to participate in a wide variety of consumer partnering opportunities. We also ensure consumers are informed and educated about their rights and responsibilities. Our training for health service staff supports their skills in understanding and implementing consumer engagement within their organisations.
Our training program is designed to be friendly, casual and supportive, helping participants to feel competent and confident to share ideas, thoughts and feedback. Here’s what some of you thought about the sessions:
"I thoroughly enjoyed the workshops, for many reasons. Reema is such a great facilitator, one who encourages interaction from all participants. I feel it was also an excellent opportunity to meet other consumer representatives, and to pool ideas. I always enjoy the learning of new information and strategies, and these workshops most certainly covered that aspect. Thank you!!"
"Great pace for the first session. Really fabulous overview of what it means to be a consumer health rep and the possibilities for contributing. I'm really looking forward to the next session."
In August and September we will be offering Fundamentals in Consumer Partnerships for consumers, carers and staff.
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Hearing prisoners’ perspectives on their health care
In 2018, Health Consumers Queensland was engaged by Queensland Health to provide a consumer perspective on the provision of health services in prisons. In 2021, the Queensland Health Office for Prisoner Health and Wellbeing engaged HCQ again to revisit the same seven correctional centres to hear from prisoners in secure, mainstream and protection to learn what has changed and what needs to be improved in relation to their health care.
Anne Curtis, HCQ’s Engagement Consultant – Specific Projects, who undertakes this work and is a member of the Queensland Prisoner Health and Wellbeing Leadership Group said, “Prisoners are the end-users of a health service provided to meet their health needs. They are the ‘patient’, the ‘consumer’. And as any other patient or consumer in community they have the same rights to health care services, and to having their voices heard and being engaged in regard to how those services are designed and delivered.”
In all, 112 prisoners were consulted with six key themes emerging relating to service improvements and a request for an increased focus on preventative healthcare services. These included:
- Medication management
- Dental access and treatment options
- Access and response to health requests
- Communication and culture
- Access to mental health and treatment options
- COVID-19 and flu vaccinations
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End of an era - celebrating Kerry Geraghty
Kerry Geraghty, a much respected Carer Consultant at the Child and Youth Mental Health Service of Children’s Health Queensland, has recently retired after 20 years of pioneering work.
When Kerry first started working as a Carer Consultant, based on her own family’s lived experience, she wasn’t sure how she would fill her days. But at her farewell party at the end of June, it was clear to all who had the honour to attend that Kerry’s work had made a meaningful impact to countless families over the decades and she had created a legacy from which other lived experience workers could call on.
Kerry has given us permission to share an excerpt from her farewell speech, and in particular we thought her words for lived experience workers would resonate with many:
"I leave this role knowing that the next stage of growth for the LEW (Lived Experience Worker)* will be exciting, successful and the way to do business.... It is a privilege to be in a role like ours and my hope is you will stay true to your role in the team and bring your skills to the fore…not to be quasi clinicians but to truly work with our young people and families and bring their voices to the table."
Thanks so much, Kerry.
* A lived experience worker is a consumer or carer who supports other consumers/families through their current journey. Mental health has led the way in this space.
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High benefit care at end of life
131 consumers and carers from 13 different towns and cities across Queensland have recently participated in 19 Kitchen Table Discussions to talk about what high benefit care at end of life means to them.
Health Consumers Queensland was contracted by Clinical Excellence Queensland (CEQ) to undertake statewide consultation with Queenslanders about their experience with care at end of life.
Sometimes, the treatment and care provided to those who have been diagnosed with a life-limiting condition (including advanced disease and frailty) does not align with the wishes and values of those who receive it. This project sought to understand what high and low value care means to consumers, in addition to better understanding how consumers can be empowered to participate in decisions about treatment and care that is right for them.
Understanding the needs of the consumer, right from the point of diagnosis of a life-limiting condition, is essential for developing strategies that ensure the delivery of high benefit, patient-centred care at end of life. Two thirds of the Kitchen Table Discussion participants had themselves been diagnosed with a life-limiting condition or cared for someone who has. Yet, the term ‘high benefit care’ was unfamiliar to many and people had very different understanding of what it means in relation to a life-limiting condition.
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The Voluntary Assisted Dying Bill
On Tuesday 25 May 2021, the Hon Annastacia Palaszczuk MP, Premier and Minister for Trade, introduced the Voluntary Assisted Dying Bill 2021.The Bill is part of a long and considered process to weigh up whether Queenslanders who are dying should have a choice over the time and circumstances of their death.
Health Consumers Queensland has made a number of submissions on the Bill following consultation with consumers and carers from across the State to ensure a diverse range of views are captured and heard. On Wednesday, 14 July 2021, HCQ's CEO, Melissa Fox, gave evidence at the public hearing for the Health and Environment Committee’s inquiry into the Voluntary Assisted Dying Bill 2021.
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Here’s to Leonie – our youth engagement superstar
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Leonie (centre) with members of HCQ's Youth Reference Group and other stakeholders at HCQ's Youth Health Forum in May.
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We’re rounding off this eNews with three cheers for our Engagement Advisor, Leonie Sanderson, whose work with Health Consumers Queensland came to an end in June.
Leonie joined us in 2016 for a five year journey as the dedicated bridge and builder of trust between families and the government to support the implementation of the recommendations from the Barrett Centre Inquiry. With over 20 years of experience working in the consumer, engagement and community space, a background in youth engagement, and a compassionate and person-centred approach, she was perfectly placed to support these relationships and help develop a shared vision for what mental health services and care for young people could look like.
Jacaranda Place, Brisbane’s extended adolescent treatment centre offering in-patient care, step up-step down facilities and day programs is the result of this work and is now a world class model of care and facility for young people with complex and chronic mental health conditions. Not only does it represent a much-needed investment in mental health services for young people, it is also, thanks to Leonie’s contribution, a brilliant example of the power of genuine co-design.
Read more about Leonie’s incredible legacy to young people’s empowerment within the health system and to this organsation.
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