Category: Blog

A wild reflection from digital health summit

 

With the Wild Health Summit in Melbourne 18 October 2022, we are inspired by the idea that digital health could improve the patient experience even while the services themselves are quite fragmented. We need to continue to champion consumer voices in this space – too often they can be an after-thought.

We asked one of our consumer representatives, Robert McCormack, if he has any key questions or reflections to bear in mind for this upcoming Wild Health Summit event, having recently attended as a HCC consumer representative at the Digital Health Institute Summit (Perth 2022) held in August at the Perth Convention and Exhibition Centre.

Q: What were your highlights that might be of interest to health consumers?

A: I met a number of healthcare and IT professionals but did not see another health consumer.  However in conversations with these professionals, several times they relayed personal experiences as either patients or as carers.  Nonetheless, there is a case to have more consumers at the table.

Q: With no other consumers, do you have any comment on that – i.e. would it be of interest to consumers in future? Should we be advocating for more consumer places?

A: the need to engage widely with all stakeholders was emphasised by the keynote speaker, and I am of the view that the patient/carer/consumer needs to be seen as the principal stakeholder.

Q: any comment you might have on the value of you being there with a consumer lens?

(Mr McCormack was generous to provide us with a report on his experience at Digital Health Institute Summit (Perth 2022), which is summarised, below…)

Some Key Observations

The participation of over 200 delegates suggests there is substantial interest across the State in the potential benefits that could be delivered from the implementation of a solid digital health strategy.

The delegates comprised a good cross-section of health professionals including nurses, pharmacists, physiotherapists, and general practitioners through to senior executives from WA Health, and IT professionals with only a few health consumers.

The opening address by Simon Millman, the Parliamentary Secretary to the Minister for Health; Mental Health suggests the Western Australian Government has some commitment to digital health as also evident in its budget commitment to the first phase of developing a digital health record.

In conversation, most delegates acknowledged that while there has been some useful progress in rolling out aspects of digital health, considerable work needs to be done to achieve substantial potential benefits. One speaker described the current progress as additive rather than transformative.

Dr Helen Bevan, the keynote speaker, emphasised, with reference to her experience in the English National Health Service, the need to engage fully across the widest net possible of stakeholders to gain acceptance for proposed change, and this engagement needs to be done in the formative stages.

She particularly emphasised the need to identify and engage the key players, the “super-connectors”, in informal networks as well as dealing with the formal networks.

I note this approach contrasts with the experience of many health consumers in that they are too often ignored locally in the early developmental phases of most healthcare projects.

I am of the view that consumers as the clients of healthcare should be the primary stakeholders consulted in any proposed development of initiatives.

The fragmentation of responsibility for health across federal and state governments and the delivery of services across multiple providers presents particular challenges in assembling fragmented data.  While the My Health Record potentially brings data together from a number of providers, the record for each patient is mainly incomplete and may not have up-to-date information.

Hospitals use a myriad of systems that don’t automatically share data although some progress is being made as evident in a presentation by staff from Fiona Stanley Hospital.

The development of artificial intelligence tools is seeing the improved diagnosis and management of healthcare.

For example (of the above), as evident in the Health in a Virtual Environment (HIVE) project at Royal Perth Hospital and research undertaken by the CSIRO in diabetic foot ulcer diagnosis and management.

The need to think beyond the current paradigms in healthcare delivery was highlighted in a presentation on delivering chemotherapy in the home by Lorna Cook Company Director & Co-Founder, View Health Chemo@home.

In a similar vein, it should be noted that COVID has caused a rethink on service delivery models which has seen, for example, the development of telehealth options and electronic prescriptions.

Digital health innovation has the potential to improve the patient experience in booking appointments, such as the Health Engine system developed by Dr Marcus Tan.  In contrast, while the WA Health Department has invested in developing the Manage My Care app and is working on further enhancements to this app, this system is currently of limited use in that not all outpatient appointments are recorded on this system and patients have no opportunity to choose appointment times.

The trade stalls were mainly commercial IT companies who have had experience in developing and implementing systems across healthcare systems.  We can expect some of these companies will have opportunities to roll out digital systems across the WA health service providers.  It will be interesting to see the extent pre-existing systems will be adopted and the degree of customisation of these systems to meet our requirements versus bespoke development of new systems.

Concluding Remarks

While there have been several useful developments in the digital health space,

to realise the substantial benefits of a comprehensive integrated digital health strategy will require wider engagement of the broadest possible group of stakeholders at the earliest stages of the project with a particular focus on consumers/patients as the primary stakeholders together with the substantial investment of resources and talent over a prolonged period.

The Health Consumers Council can potentially play a key role in shaping the digital future of healthcare delivery by providing a broad range of consumer insights required for the critical success of the digital health strategy.

(This article/report is courtesy of Robert McCormack, HCC consumer representative.)

What the HCC Engagement team have been up to in Djilba (August-September) 2022

It’s been a busy few weeks for our team – here’s a selection of some of the meetings and events we’ve been part of…

  • Meeting with the WA Council of Social Services to discuss work happening on partnership in relation to the WA Sustainable Health Review (SHR)
  • Meeting with Helping Minds to discuss shared interests
  • Promoting consumer perspectives as part of the East Metropolitan Health Service Obesity Prevention Strategy Implementation Committee
  • Meeting with East Metropolitan Health Service to discuss ways of getting consumer input to inform plans for a weight management clinic
  • Promoting consumer perspectives as part of the East Metropolitan Health Service Weight Management Clinic model of care project reference group
  • Hosting a community conversation about the WA consultation on Assisted Reproductive Technology and Surrogacy Acts to inform HCC’s submission on this topic
  • Meeting with the consumer organisations in other states and territories to discuss how we can have more of a state consumer voice on national issues – such as primary care reform
  • Meeting with the Department of Health to discuss our new contract arrangements (which will kick in from 1 January 2023)
  • Meeting with the Department of Health to understand the state position on Long COVID
  • Attending the launch of the Consumers of Mental Health WA launch of their new individual advocacy service for people with psycho-social disability
  • Call with Cancer Council WA about running consumer focus groups
  • Taking part in cultural responsiveness training
  • Hosting two consumer forums – funded by the WA Department of Health – on the experience of multicultural men and multicultural people living regionally in relation to cancer care and information
  • Taking part in the Care Opinion national advisory group
  • Meeting with the team at the National Justice Project about the next steps with the Aboriginal Patient Advocacy Training
  • Promoting consumer perspectives at the Emergency Access Reform Program Control Group
  • Delivering our first fully virtual consumer representative training workshop
  • Meeting with the Department of Health to discuss the work on SHR Recommendation 23 in relation to clinical and consumer leadership
  • Meeting with the WA Primary Health Alliance to support consumer involvement in the development of a model of care for chronic heart failure
  • Meeting with the WA Country Health Service to help them access consumer-facing materials about engaging with health services
  • Meeting with the Department of Health about sexual health and blood borne viruses
  • Meeting with Consumer and Community Involvement Program (CCIP) and a consumer leader to discuss opportunities to connect consumers, carers and community members with lived experience of cancer – planning a community conversation in October
  • Meeting with the Department of Health to discuss communities of practice
  • Taking part in an online forum on COVID Antivirals
  • Attending the launch of the refreshed Live Lighter campaign
  • Promoting consumer perspectives in a meeting with the WA Enrolled Nurses Cooperative hosted by Community Skills WA
  • Hosting a community conversation about the reality of “living with COVID” with Professor Grant Waterer
  • Meeting with the Department of Health about their plans to involve consumers in the development of a WA Safety and Quality strategy.
  • Meeting with Community Legal WA and the WA Financial Counsellors Association to discuss shared interests and possible collaboration opportunities
  • Meeting with People With disability WA to discuss the Empowering Health Consumers With Disability training we are running together
  • Attending Clinical Services Redesign Methodology training with other people involved in the Emergency Access Reform program across WA Health
  • Meeting with Asthma Australia to discuss shared interests
  • Hosting a cultural sensitivity training with a private hospital
  • Hosting an online workshop on Acknowledging Country (find out more about these workshops and sign up at https://www.eventbrite.com.au/e/acknowledging-country-tickets-414587019937
  • Presenting – alongside two consumers – on the lived experience of overweight and obesity to 3rd year medical students at Curtin University
  • Meeting with the Department of Health and the WA Primary Health Alliance about the work on the WELL Collaborative (WELL = Weight Education and Lifestyle Leadership)
  • Talking on the ABC Perth morning show about the implications for consumers of the one-off public holidays on 22 September

This is only part of the work HCC does. At the same time, our Advocacy team have been responding to individual consumer enquiries every day providing both “in the moment” support, and also longer term support and advice to consumers who’s enquiries require involvement over a longer period of time.

 

Engagement Officer, L4 – full-time

Can you help us build a social movement in health?

At Health Consumers’ Council, we believe in people power. Through our engagement and partnerships work, we are building a social movement in health – where the people who use health and healthcare services, and the people who work in them, can work together to identify priorities for improvement and make positive and lasting change.

We’re looking for a can-do person to join our team and help us extend our reach to more people in the community who use health and social care services, as well as reaching more of the people who work in them.

Health Consumers’ Council WA

The Health Consumers’ Council of WA (HCC) is an independent community-based organisation which was established in 1994, representing the consumer’s voice in health policy, planning, research, and service delivery. We stand for equitable, person-centred, quality healthcare for all West Australians.

Three people sitting at a desk looking towards the front of the room. In the background is an Aboriginal flag and a Torres Strait Islander Flag, and a whiteboard with post-it notes

About the Role

This role is based in the Engagement team and is for an initial period of up to 2 years with the possibility of extension. As well as managing your own projects and activities, you will also provide support to other members of the Engagement team including the Aboriginal Engagement Coordinator, the Cultural Diversity Engagement Coordinator, the Marketing and Communications Coordinator and the Deputy Director.

This is a full-time role based between our offices in Mount Lawley and your home. For the right person, we may consider part-time options, but ideally we’re looking for someone who can be available to work 5 days/week.

What We Offer

  •  A friendly and supportive team that’s making a tangible difference in the community
  • A competitive not-for-profit annual base salary – Level 4 Social Community Home care and Disability Award ($39.26/hour + super)
  • Salary sacrifices up to $15,900 per annum
  • An engaging and flexible working environment
  • The opportunity to work on a wide range of projects and to learn practical skills on the job.

What you’ll be doing

This is a mixed role with lots of variety so you’ll get the chance to work on a range of projects and activities within the Engagement team’s portfolio including:

  • Delivering training and presentations to a range of groups including consumers, carers, community members, people with lived experience and staff working in government, health care and social care
  • Planning, organising and delivering events and workshops – including virtual, face-to-face and hybrid (both virtual and face-to-face)
  • Analysing feedback from events and workshops and creating reports to share this information with a range of stakeholders
  • General engagement project coordination including
  • preparing, monitoring and reporting on project plans
  • liaising with project stakeholders to ensure tasks and deliverables are achieved in line with project plans
  • monitoring and reporting on project budgets
  • responding to enquiries from a wide range of stakeholders about engagement and partnership practices and programs, including providing advice
  • creating and distributing engaging content for a range of platforms including social media, website, email, MS Teams and publications
  • helping to recruit and support volunteers to support HCC’s activities.

What you’ll need to succeed in this role:

  • Excellent literacy and writing skills and strong communication and interpersonal skills
  • Experience in a people-facing role such as customer service or stakeholder engagement and a love of connecting with people
  • Experience in organising meetings, workshops or events
  • Collaborative working style with an ability and willingness to muck in with other team activities as required
  • Be able to work autonomously and within deadlines, including managing a number of projects at the same time
  • Proactive, reliable and flexible attitude and comfortable working in a fast-paced adaptive environment
  • Highly proficient general office IT skills for day to day office activities including the ability to quickly learn to become very comfortable using MS Word, MS Teams and MS Powerpoint – and using MS Excel for organising and sorting data – and comfortable learning new IT skills quickly and with minimal input as required

If you’ve had experience of stakeholder engagement or working with volunteers that would be great. And if you have other skills and experience that you think makes you a great fit for this role, please tell about those too!

Diversity and inclusion

At Health Consumers’ Council we know that strength comes from diverse perspectives being at the table. If you require any adjustments to submit your application, we invite you to get in touch with Clare Mullen via email clare.mullen@hconc.org.au or call reception on 08 9221 3422.

Please read the attached position description for more details – please refer to the criteria in your application.

To apply for this role, please send us an email (to info@hconc.org.au) and a copy of your resume and tell us:

  • What is it about your professional or life experience that makes you a good fit for this role? (Please make it clear how these relate to the tasks and criteria in the position description in your response.)
  • Why do you want this position?
  • How do you see yourself helping Health Consumers’ Council to deliver on our plans?
  • What do you look for in a working environment that can help you thrive?

Next Steps

To be considered for this opportunity please email applications to info@hconc.org.au by no later than 9am on Tuesday 27 September 2022.

Consumer update on Sustainable Health Review workforce recommendations

Sustainable Health Review – update on health workforce issues

The Sustainable Health Review is a wide reaching and ambitious reform program. After an extensive consultation process the Review was published in 2019 and includes 30 recommendations, organised into eight enduring strategies.

Some of the work was paused as the health system responded to the COVID pandemic, but as we move towards living with COVID we’re starting to see action and progress on a number of the recommendations. You can see more about HCC’s involvement in this work at https://www.hconc.org.au/what-we-do/policy-development/sustainable-health-review-consumer-view/

Issues relating to the workforce and culture of the health system were included in the Review, and there are five recommendations that cover these issues.

Find out more about health workforce issues

Health Consumers’ Council hosted a consumer information session to share what we know about work that is happening as part of the Sustainable Health Review on workforce issues.

  • Click here to see the slides from that information session
  • Click here to view the Zoom recording of that information session

Consumers have their say

Health Consumers’ Council hosted two consumer consultations for the Department of Health on one of the recommendations on this topic on 26 July 2022.

Recommendation 26 – Build capability in workforce planning and formally partner with universities, vocational training institutes and professional colleges to shape the skills and curriculum to develop the health and social care workforce of the future.

You can view the post-its that were created as part of these online discussions

Session 1 – focus on regional perspectives

Click the links below to see the dot points for these topics

 

Session 2 – focus on metro perspectives

Click the links below to see the dot points for these topics

 

To be added to a mailing list to be kept informed about this work, contact Clare Mullen clare.mullen@hconc.org.au

(Last updated 29/07/22)

 

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/

 

Relationships and compassion essential for great care

By Clare Mullen, A/Executive Director, 20/03/22

It’s all about relationships…

This week I was part of several conversations in meetings where I found myself saying the same thing:

No matter how good each bit of the system is, they’re only as good as the relationships between the different parts of the system that make up the whole.

In publicly funded services, there is a strong commitment to high quality services. But what is sometimes (even often) missing is an understanding that those services are often only one part of a person’s experience.

I had been reminded about this by a presentation by Fiona McKenzie of Orange Compass in a recent event hosted by the Obesity Collective. (You can watch the video online here)A screenshot of a powerpoint slide showing that relationships that join different elements of a system are important to how that systems functions

One of the challenges of publicly funded services is that there is often a preference for funding activities that a politician might be able to point to at a critical point in the election cycle. The almost hidden work of building and investing in trusted relationships between services doesn’t necessarily fit that criteria. And the more visible work – like networks and forums and other events – can sometimes be misunderstood as not being essential work, because it’s not client-facing. And yet, it’s critical that services are joined up because the person that’s experiencing all those systems ideally lives their life in a joined up way – and will benefit if those services are integrated.

The best thing I’ve read on this is Radical Help by Hilary Cottam – she describes a number of truly innovative ways of designing services with the person at the centre.

Radical is the word. And if we are to get truly person-centred services, we will need leaders to step up and take some radical action.

Compassion begets compassion

This week I also had the chance to listen in to a presentation by Erin Cotter-Smith – about the importance of recognising and addressing the impact of vicarious trauma on people who witness other people’s trauma. She shared some of her own experiences and created space for care givers to learn more about things that might help.

It was a timely reminder about the person on the other end of “person-centred” care.

Healthcare professionals around the world have been under significant pressure with the added burden of responding to COVID-19 for over 2 years. Even here in Western Australia, while we are only now dealing with the reality of living with COVID, we’ve all been on high alert for its arrival at any time.

In WA the Minister for Health’s published survey from August 2021, only 47% of staff across WA Health services agree that “I believe my organisation cares about my health and wellbeing” – to be clear, that’s less than 1 in 2 of the people who work in these services. And only 57% believe they are “given the support [they] need to deliver a high level of service to [their] patients/clients/customers”.

As someone with a strong interest in the care that patients/clients/customers experience, I’m hoping that someone in WA Health is taking real practical action to listen to staff and implement some new approaches that will see those numbers rise significantly.

Putting the public back in public health

By Clare Mullen, A/Executive Director, 07/03/22

World Obesity Day 2022 – everybody needs to act!

World Obesity Day is marked on 4 March each year. The theme this year is “everybody needs to act”.

At Health Consumers’ Council (HCC) we’re acting by taking on the responsibility for hosting the WELL Collaborative (Weight Education and Lifestyle Leadership) – see below.

World Obesity Day is… complicated.

I know some people see it as a day when people in larger bodies are demonised. They utterly reject the term obesity and question the science that’s referred to as showing a link between increased weight and poorer health outcomes.

I have concerns about these too.

But I also know that many people in the community have negative health experiences relating to obesity. Whether that’s concerns about weight related health issues, or the mental health impacts of weight stigma and bias.

And so, through our work at HCC, we put forward the wide range of consumer perspectives that we’ve heard, while also going where there is political will, and some resources – and for now, that is obesity. (See below for more information about how we’re trying to change the conversation through promoting consumer and lived experience voices on this topic…)

I had the chance to take part in a couple of events last week to mark World Obesity Day. There is so much great work happening in this area but I’m particularly excited to see the momentum and recognition building for the need for diverse lived experience voices to be leading this work.

A couple of organisations that are worth following on social media, or subscribing to their mailing lists:

  • Australia: the Weight Issues Network. This is a group led by and for people with lived experience of weight issues. They run regular community conversations where members can learn about various aspects of the science of obesity – as well as advocating for more understanding of the personal aspects – find out more at www.auswin.org.au
  • Europe: the European Coalition for People living with Obesity. This group works collaboratively across Europe to improve the lives of people who are living with and are affected by the chronic disease of obesity through advocacy, policy and education. They run regular “patient lounge” discussions with consumers and researchers – find out more at https://eurobesity.org/

I really believe that only by raising lived experience voices in this space will we see real lasting positive change.

But it can be difficult to raise your head above the parapet in this space as a person with lived experience – particularly for people impacted by severe obesity.

We’ve all been so immersed in the idea that our weight is “our fault” that body shaming and judgement are practically sanctioned by some public health campaigns (grabbable gut anyone?).

And so health services and systems who want to hear more lived experience perspectives have to collectively invest in supporting people to develop their confidence to share their personal experiences in public settings for the greater good, and in creating safe places for those conversations to take place.

We’re lucky in Western Australia that the WA Department of Health and the WA Primary Health Alliance have recognised this and continue to support WA consumers to be heard on this topic.

Putting the public back in public health

I first heard the phrase “Putting the public back in public health” in a WA Department of Health publication, led by Professor Tarun Weeramanthri when he was the Chief Health Officer there.

It has stuck with me since. I think it’s because I see that so many of the elements that impact on our health and wellbeing are factors in the realm of our social worlds, rather than in the realm of our clinical experience.

This idea sharpened considerably for me when I took on HCC’s involvement in what was then called “The Obesity Collaborative – Partners in Change” project. A forward thinking team at the WA Department of Health and the WA Primary Health Alliance gave HCC a small grant to gather consumer insights so that work to address the health impacts of obesity was grounded in the experience of people with lived experience.

That work led to a survey with 750 responses, 25 first-person accounts, and two videos featuring consumers sharing their perspectives – perspectives that were shared at the two Summits on the subject in 2018. (You can see that work here.) That work shaped the development of the WA Healthy Weight Action Plan.

What emerged from all the stories and feedback people shared was:

  • people’s experiences relating to weight and health vary widely. This is backed up by the academic literature which highlights the heterogeneity of people’s experiences of obesity.
  • weight bias and stigma is a huge public health issue that is under-recognised by health professionals and public health teams. Academic evidence suggests that in some cases, the health impact of weight stigma can be more harmful than the health impact related to weight.
  • that many of things that people turned to when seeking to address this issue were non-clinical. One hypothesis for this that diet culture needs us all to feel individually responsible for our weight so that we will buy programs and products that promise the holy grail of long-term weight loss.

Another personal observation for me was the role that our current economic model plays in our health. Whether it’s because there is limited regulation of the food industry (because #profit), or because people living on no/low-incomes are dealing with a whole range of issues including how to make ends meet, or because we are encouraged to believe we should be so committed to our jobs that we’d rather miss a meal than an important meeting – the economic environment has a huge impact on our health and health inequity.

Partnering with consumers – in implementing positive change

The value of lived experience perspectives in the Healthy Weight Action Plan was recognised as essential and another grant from the Department of Health enabled HCC to gather more consumer insights to support the implementation of the Plan. (Again, kudos to the Department of Health for their forward thinking approach. Too often “consumer engagement” stops once the plan is published.)

That grant enabled HCC to gather insights from people with diverse perspectives on the topic including Aboriginal people, people from culturally and linguistically diverse communities, men, young people, and people with disability. It also enabled us to ensure that consumer perspectives shaped the critical activities being implemented as part of the plan. In this way, consumers or consumer perspectives were involved as projects were shaped and developed including:

  • Scoping a new proof of concept program offering virtual support to consumers who were using evidence-based very low calorie diet products
  • Scoping commissioning standards for DoH and WAPHA to use when commissioning services in this area
  • Scoping and refining the collaborative approach to addressing this issue in WA ↓↓

Introducing the WA WELL Collaborative!

The WA WELL Collaborative (WELL = weight education and lifestyle leadership) is the culmination of many hours of work by many teams of people across the community and the health sector.

The WELL Collaborative is a network where everyone with an interest in addressing the health impacts of weight, overweight, and obesity can come together. Whether that’s to find information about existing services, where consumers can be connected with clinicians and researchers who are working on new concepts, or to share challenges and wins about working in this very complex field.

One main way that people can access the network is through our freshly launched website:

You can sign up there to receive regular updates about Collaborative activities. The website is a living site and will be updated regularly.

HCC, WA Department of Health and WA Primary Health Alliance – taking action

I’m delighted to say that HCC has been given a grant by the WA Department of Health and the WA Primary Health Alliance to enable us to continue to ensure that lived experience voices continue to shape and drive this work. Part of our role is to host the backbone function of the WELL Collaborative. In practice this means hosting different networks, organising events, and managing the website.

The first thing I’m really proud of is the name – originally in the Plan this group was going to be the Obesity Collaborative. But since we started talking to consumers, it was clear that the term “obesity” was not one they connected with. It has become widely understood in the community as a pejorative term – and so, unsurprisingly, many consumers aren’t drawn to it. And so when working on a brand and name for the network, we made sure that was clear to the team developing those.

(Note of caution… we know that some consumers are very comfortable with the term and have questioned how other people like them – who are seeking help for the health impacts of obesity – will find their way to the website. We are addressing that through the data we use for search engine optimisation and our communications with other partners.)

The other ways that consumers have shaped this network include the imagery that has been used, and the focus on weight stigma.

Representation matters

We regularly hear from consumers in larger bodies that they are tired of never seeing any positive images when discussing weight and health. They want to see themselves reflected in images that reflect their lives – which are not all doom and gloom. So we connected the website team with a number of the image libraries that have been curated by various groups around the world.

Weight stigma – a major public health issue

A major finding from our work with consumers was the impact that shame, embarrassment and stigma has on people’s health. Whether that’s explicit bias being expressed by health professionals, or implicit in the body language; or it might also be internalised weight stigma – where we’ve been brought up to believe (incorrectly) that we are entirely responsible for our weight and so if we aren’t able to shape our bodies the way we want to, then it is a personal failing. All of these can input on our health – if we don’t receive the correct healthcare advice and treatment because of incorrect assumptions based on our size; if we don’t reach out for treatment because we’re embarrassed our efforts haven’t worked, or if we cope with body shaming by opting for less healthy behaviours.

HCC will be doing a lot more on this topic in the coming months – so watch this space.

But for now, check out this video where consumers talk about their own experiences of weight stigma in health services, and find out what you can do to become aware of any unintentional bias you may hold at www.hconc.org.au/end-weight-stigma

Health consumer stories driving positive change

COVID, consenting to medical research, cancer information, and promoting health

The first few weeks of 2022 have been a busy time in health in WA…

Preparing for and living with COVID

Those weeks have been a time for everyone at Health Consumers’ Council of intense listening to, sharing and advocating for more consumer voices in the planning and preparing the health system’s response to preparing to live with COVID.

In that time we’ve held three discussions with consumer leaders and representatives across WA to hear what was on people’s minds as they were preparing themselves, their families and their communities for living with COVID.

Key messages we heard were that there was a sense of fear in some parts of the community as people navigate the shift from “COVID is to be avoided at all costs” to “we are living with COVID”. We also heard that there was a lack of information for health consumers who have underlying conditions, or who are immunocompromised, and need to make additional preparations. And the third strong message was people’s concerns were not just for their health, but the social implications of COVID. For example, who can people rely on if they’re a carer and they get sick? How do people get access to care if they’re unable to leave the house? What should they be doing to make sure they can get access to the healthcare they need – and stay safe?

And finally, we heard a strong message from health consumers about the opportunity to help people feel more empowered and confident in their ability to prepare.

We’ve shared these concerns with health leaders including the Minister for Health, health service Chief Executives and the teams leading the COVID response at the WA Health Department and the WA Primary Health Alliance.

By the end of last week, we’d seen a couple of significant changes – South Metropolitan Health Service had published information on their websites for people who are immunocompromised, and some patients who are at a higher risk of developing severe disease if they contract COVID are receiving calls from their specialists to help them work out how they can prepare themselves and their families.

We also were able to get information about the new COVID Care At Home program out to over 110 people who registered for a community conversation with Dr Robyn Lawrence from the Health Department, as well as getting into out to the broader community via a mention in Renee Gardiner’s column in The West.

The next focus will be to keep getting the message out into the community – particularly to those groups where mainstream communication methods like websites and news media in English are not widely used.

The other focus will be on encouraging other people in the community to play their part in getting information out to the people who need it and to look out for their neighbours or family members who might value a bit of support. As one consumer who was quoted in the article in The West said “We are all in the same storm but the boats are so different it’s hard to hang out in the tinny with a hole in when others are in their yacht.”

www.hconc.org.au/issues/covid-19

https://www.healthywa.wa.gov.au/Articles/A_E/Coronavirus/Managing-COVID19-at-home-and-in-the-community/WA-COVID-Care-at-Home

And it’s not all about COVID… have your say!

As we finalise our preparations for living with COVID it’s important to remember it’s not the only health issue that’s important for the WA community. There are a couple of key consultations that are looking for consumer input:

  • What are your views about the issue of giving consent to treatment – particularly if you’re incapacitated?
    • The Guardianship and Administration Act Part 9E came into existence on 7 April 2020 “to enable medical research to be carried out in respect of persons who do not have the ability to consent  to it.” While it might seem a bit dry, it could make the difference between someone accessing cutting edge treatment that is part of a research program or not.
    • Find out more and complete the short survey by 25 February at https://www.surveymonkey.com/r/GuardianshipAdmin9E
  • Have you or someone you know had cancer? What information was, or would have been, most helpful?

And finally – towards a healthier WA

This month we also made time to respond to the WA Department of Health’s consultation on the WA Health Promotion Strategic Framework. We called for a stronger focus on health inequities, the recognition of early childhood trauma on our longer term health, and encouraged a bold vision for a healthier WA that the whole community can buy into.

You can read our submission here https://www.hconc.org.au/wp-content/uploads/2022/02/WA_Health-Promo-Strategic-Framework-HCC-response-040222.pdf

Clare Mullen, A/Executive Director
February 2022

Community and connection – how peak bodies pivoted during COVID-19

When COVID-19 hit the headlines early in 2020, there were big concerns around how people would be able to maintain strong connections with their peers and communities, while self-isolating, working from home, and spending more time on their own.

It was fascinating to see how organisations around WA pivoted their activities to make sure people could still connect and get the support they needed. We take a look at how that unfolded for several key consumer organisations, and the lessons learned about community during a global crisis.

People With disabilities WA

People With disabilities WA have always done a lot of work through phone and email so the biggest shift was ensuring that these things could still happen while staff have been working from home. We were aiming for as little disruption for consumers as possible and the biggest issue was that some of our group meetings for projects had to move from face-to-face to an online Zoom or other format.

What we found was that for most of the people with disabilities that were part of these groups, doing a meeting via Zoom was a lot easier and made them more able to attend and participate. This was the same for some of our individual advocacy work where people with physical disabilities in particular and disabilities which made it difficult to access transport were much more comfortable using tele or videoconferencing. However, for others with different disabilities, Zoom meetings were and are more difficult.

We found that there was a very little change in the amount of interaction and communication that we have been getting from consumers. Certainly there has been no decrease in the need for advocacy whether things were COVID related or not.

For our individual advocates and our project staff we will be continuing to use Zoom and Microsoft Teams as a way to connect with each other and with people coming to us for support. Our staff are seeking more flexible arrangements with their work, and our technology and understanding of technology has increased to allow that flexibility to happen both for our staff, and the way we interact with consumers. These are absolutely things that we need to keep in place and will be keeping in place into the future.

 

Consumers of Mental Health WA

Consumers of Mental Health WA (CoMHWA) created and maintained a central hub of resources for consumers and provided education and upskilling to peer support workers working through these changing times.

They increased their social media presence and encouraged ongoing engagement with members through online means. To support this, they recorded video messages from staff and produced resources for how to use online video conferencing.

CoMHWA provided a continuity of support through transition to phone and online meetings where appropriate. They ensured phone and in-person support resources were mailed to members, to ensure that members without technology or internet access where still able to reach needed supports.

CoMHWA found many people responded positively to these changes, stating that the information being made available was useful and a welcome distraction. Importantly, they noted it was great to still be able to connect with others.

However, some consumers found the technology difficult to navigate or did not have access to technology. Others found it hard to engage with others effectively in this way, with one consumer saying it was “harder to stay focused in online meetings due to the lack of active engagement activities and interaction”.

On the whole, many consumers want the provision of education and groups to continue online as the accessibility and flexibility is more suitable to their needs, with one consumer saying “thank you so much for this series, it has been very helpful”.

While reliance on technology solely reduces access for some of the population, peer support can be useful to assist people to overcome some technology barriers.

Engaging via video conferencing increases accessibility for some of the population, and a key factor to successful engagement is regular, short sessions.

Online delivery of webinars/meetings/groups will continue as an option to allow access as CoMHWA works towards a ‘new normal’. The lessons learnt from this period will be used to ensure the broadest access and distribution of information, resources and supports.

 

Carers WA

When Carers WA had to cancel their face-to-face services, they relied on phone, Skype, email and Zoom to stay connected with their community.

While there was a good response to this change, many were keen for specific services, such as social support groups, education and training sessions, to resume in a physical format.

On an organisational level, Carers WA learned that while working from home is technically possible for some roles, it didn’t work as well for others. However, the organisation plans to consider more flexible working for the future, maybe mixing office and home working where practical.

Looking to the future, Carers WA note that many of their services are provided remotely as the norm so these will continue. While they don’t plan any significant changes in service delivery, they will have more scope to hold meetings with others service providers or interstate people and organisation online through Zoom.

 

Health Consumers’ Council

 

Our biggest priority over the last few months has been to mitigate the risks to our staff and community, while maintaining a focus on connection. Like many around the country we took our work online, connecting with our own team, consumers and WA Health through Zoom, Microsoft Teams, Scopia, and other online platforms.

As everyone began to adapt to a new way of doing things, our engagement team began to upskill in hosting engaging, interactive online events, and we hosted introductory sessions to help consumer navigate Zoom.

We heard that opportunities for health consumer, carer, community and family representatives to connect with each other, with the health system and with organisations like us became even more important, as many in-person opportunities were postpone or cancelled. We quickly convened a COVID-19 community of interest, so that our executive director Pip Brennan could contact a ready source of consumers and carers for surveys, feedback, consumer opportunities and online forums.

Our fortnightly online drop-in sessions brought a lot a value to the community, providing the space for an informal, online get together with anyone involved or interested in consumer, carer, or community representation. In particular, they gave us a chance to involve people in rural areas who may not otherwise have been able to make it to a consumer event in Perth. Overall, we had about 120 participants across the five fortnightly sessions.

We listened to what we were hearing from consumers and their questions around COVID-19 and got involved in more online events. Our fortnightly Fireside Chats with WA health experts allow for interactive Q&As with the likes of the Director General David Russell-Weisz, and Assistant General of Clinical Health Excellence, James Williamson.

We continued to work closely with health consumer peaks across Australia, partnering with Health Issues Centre for a series of online forums exploring COVID-19 and Australia’s recovery from the pandemic. These workshops were attended by several hundred people and featured guests like Victoria’s Chief Health Officer, Professor Brett Sutton and Deputy Chief Public Health Officer and Executive Director Health Protection and Licensing Services, Dr Chris Lease.

Throughout it all we used social media and email to keep in regular contact with our community, not just about our own engagement activities but with reliable COVID-19 updates, consumer opportunities, and other ways to stay connected with community during challenging times.

This sense of connection and being able to reach a wider audience has been something we will carry with us as we establish new ways of working in the wake of COVID-19. We’re committed to finding a good balance between in-person and online events that removes as many barriers as possible for those wishing to attend, and will continue to look at ways to make our engagement activities more accessible to all.

 

Befriend

*Befriend is a West Australian community development organisation sparking inclusive, connected communities. They operate community building and consulting services, developing the capabilities of local residents and community organisations to nurture connection and belonging for all people – and have a unique perspective on community connection.

Some of the most adverse effects of COVID-19 on West Australians were the social effects. Physical distancing precipitated social disconnection from each other, at a time when we needed our relationships more than ever. As an organisation that fundamentally exists to nurture connection, we invested to pivot and scale our operations in response to the rapidly elevated community need for social connectedness.

Our community builders pivoted our work in supporting inclusive social networks from place-based to digital, supporting local residents to host online social gatherings that offered a relevant alternative to help people stay socially connected. Our consultants acted in an advisory capacity to support a number of community organisations and local government authorities with designing contemporary service models that would support social and community connectedness within the constraints of physical distancing. For the Befriend Team, it was not a matter of ensuring continued support; it was a time to step up to the call of our purpose.

It was affirming to have so many other people realising what we’ve known all along, what we advocate for at the heart of our work at Befriend – that connection and community are at the heart of community wellbeing, and are essential in sustaining a thriving society. Services can only do so much; it is the strength of our relationships with each other in community that are fundamental to our collective wellbeing.

It’s been a time for community members to realise the value and importance of all members of society – of our elders, of people with diverse abilities, of people from culturally and linguistically diverse backgrounds.

It’s been a time to learn about and reflect on the power of technology in sustaining our connectedness, and to work on our relationship with technology, finding new and different ways to use it whilst managing the ways that it can constrain our connectedness and wellbeing.

As we move beyond the turbulence of recent months, one of our primary objectives at Befriend is to capitalise on the increased awareness of the importance of social connectedness and the increased motivation for community contribution, furthering our community building work to mobilise and support more citizens to become active in nurturing connected communities.

 

*This article was originally published in Health Matters 

Experts by experience – mental health peer support

In our previous Health Matters focused on self-advocacy and peer support, Rhianwen Beresford, Convenor of the WA Peer Supporters’ Network, spoke about a vision for peer support where every Western Australian knows what peer support is and can access it if they want to.

Peer support happens across all sectors and walks of life. If you’re using your own experience to help someone through a similar experience, that’s peer support. Mental health peer support offers a whole range of benefits – friendship, empowerment, lessening of stigma, increased acceptance, and shared insights about life with mental health experiences.

On a larger scale, mental health peer support can have a positive impact on the way society views and treats mental health, leading to improvements in service and more person-centred, trauma-informed responses.

Carli Sheers is an active consumer representative and mental health advocate, and we spoke to her about the importance of peer support.

Why is mental health important to you and what made you want to become active in this space?

I recovered from mental health issues through accessing peer support many years ago, and have worked in the mental health sector in various roles for 13 years. My experience and skills as a Consumer Consultant have grown through active participation in the sector and Membership of Mental Health Australia’s National Register. With intention, I developed an extensive network of mutually beneficial collegial relationships and can speak from beyond my own personal experience with their consent. I am lucky to have access to a peer mentor who I admire, respect and value. I became active in the mental health sector to raise the expectation of recovery, reduce stigma and discrimination, and increase my employability as employment is an indicator of health. I also invested in my education and founded a mental health education and training consultancy business last year.

What are the major benefits of mental health peer support, and why does it play such an important role alongside clinical treatment options?

Peer workers undertake a variety of functions in diverse settings, from service delivery to policy making to funding of services. Personal lived experience is an essential job criterion, and other competencies include a person’s overall life experience, employment and education history, emotional maturity and ability to engage and communicate. Peer workers provide an effective and high-quality intervention that can be either complementary to clinical service or, in some situations, effective as a stand-alone intervention. They see challenges as growth and learning opportunities, not as crises.

Mental health peer support workers are experts by experience and provide a specialist knowledge base that can transform individual lives and systems of care. They are recognised for using their insights and expertise from their personal expertise to inform their work, and can walk alongside people who have experienced similar distress and support them without trying to ‘fix’ their situation.  It is about engaging people with mental health issues as the central actors in their management of their mental wellbeing, helping them to find meaning in their life experiences, and guiding people’s journeys towards a contributing life. This was my experience when I accessed Grow*, a national consumer mental health organisation.

Major benefits of mental health peer support include helping people to believe in themselves and re-build their lives, discover their own solutions and develop a sense of control, master their emotional strengths, work towards self-agency and self-advocacy, enhance the quality of lifestyle and personal choices, and finding their strengths, capabilities and possibilities. Peer workers influence much needed cultural change in services and workplaces, decrease people’s need for costly acute services, and are effective in engaging people who have been difficult to reach and not benefited from traditional services.

(Source: Peer Work in Australia. A New Future for Mental Health. 2018)

In the wake of COVID-19, many people are finding themselves on a new mental health journey. As someone who advocates in this space, what advice would you give?

Navigating the mental health system can be complex, as there are many pathways for care and support. It is important to ask for help, and I encourage people to see their GP (or access a Telehealth appointment) if they are not coping due to COVID-19.

I also refer people to the WA Mental Health Commission’s website as a reliable source of information about supports and services. Consider joining a support group via ConnectGroups (https://connectgroups.org.au/), who are the peak body for support groups in WA.

Do you have any advice for those interested in becoming a mental health consumer advocate?

Life-long learning is important to being an effective mental health consumer advocate.  I encourage people to access Consumer Representative training via Health Consumers’ Council and Consumers of Mental Health WA+.

 

*Grow is a community-based organisation that has helped tens of thousands of Australians recover from mental illness through a unique program of mutual support and personal development. To find out more, visit https://www.grow.org.au/

+CoMHWA currently hosts the WA Peer Supporters’ Network (WAPSN), a network for and by peer supporters in Western Australia. You can join or find out more by contacting info@peersupportwa.org.au or contact (08) 9258 8911.

This article was originally published in Health Matters