Category: Blog

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/

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:

• www.thewellcollaborative.org.au

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

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 

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

Feedback is a good way of gaining information on areas of strength and areas that need to be improved. In healthcare, feedback can be a key way to improve patient safety and ensure ongoing quality improvement.

Whether your experience was good or bad, sharing your feedback could help raise awareness and lead to improvements.

But we know giving feedback or making a complaint isn’t always easy. In late 2019 we were commissioned by the Department of Health to support them in seeking consumer input about the process of making a complaint and giving feedback. Many people commented on how difficult it can be to find out how to give feedback or make a complaint.

Many people also responded that a prominent reason for not giving feedback was simply that they were not asked, saying there was an opportunity to increase ways to give feedback “in the moment”. People noted that in hospitality, you are asked for feedback at various stages in the process, and that this gave people an opportunity to address any issues when they arise. Ways of making it simpler to give feedback were discussed, including looking at how to use technology to encourage feedback from a wide range of people – for example, kiosks where people can quickly note 😊 or ☹ could help a service get a quick idea of how it’s doing, as well as making it easier for consumers for whom English may not be a first language to give feedback. We really encourage consumers to give feedback even when it’s not asked for, because feedback is the backbone of safety and quality improvements.

You can also keep an eye out for feedback forms that you may be given if you go to hospital (they may be in a folder near the bed) and speak to the person providing your care about how you can give feedback. By taking a look at our self-advocacy resources you can prepare for your doctor’s visit or hospital stay, which may help you feel more confident to ask questions and provide feedback.

You can give feedback verbally, in writing, by speaking directly to health service staff, to consumer or patient liaison staff, to Aboriginal Liaison Officers, or if given a follow up call after discharge from hospital. Many people commented that making a complaint, or sharing some positive feedback can feel like an extra thing to do after you’ve finished at a health service. One way that many people felt was a relatively easy way to give feedback was via Care Opinion Australia (previously known as Patient Opinion – see below).

While many people highlighted barriers to giving feedback that were discussed in these sessions, in the workshop with Aboriginal people, many people described how their experience of racism in the health system impacted on the likelihood and way they give feedback or make a complaint. We heard strongly there is much that needs to be done to ensure feedback mechanisms are accessible and culturally safe for Aboriginal people and will continue to advocate for this.

Many people spoke of how valuable it can be for people to have access to independent support to make complaints to health services. Health Consumers’ Council provides an individual advocacy service, as do a number of organisations like People With disability WA and Carers WA, but we know there are more people who could benefit from this support than are able to access it currently. Again, increasing access to advocacy support is something we will continue to argue for.

We’ve gathered some resources to help guide you on where and how you can give feedback. You can also call us on 9221 3422 or 1800 620 780 (country freecall) for advice on the best way to make a complaint, or for support in making a complaint.

Care Opinion Australia

Care Opinion Australia, previously known as Patient Opinion Australia, is an independent online platform for people to provide feedback on services.

At www.careopinion.org.au anyone can share their stories about their experience of care. The site covers health and aged care, and community services in Australia, giving service users, their families and carers the opportunity to publish their personal experiences, good or bad, of the care system.

Care Opinion works so well because it gives you a public, but anonymous, way to voice your experience about the services you use. The right people at the service or provider will see your experience and have the chance to respond.

Care Opinion is safe, confidential and independent of services and authorities. Additionally, reading the stories that other people share on Care Opinion may help you choose the best care providers.

If you are unable to write your story on the website, you can speak to Care Opinion in confidence on the phone by calling 1300 662 996 (mobiles may pay charges).

“A couple of years ago my daughter was admitted to hospital. Unfortunately there were some issues that arose during her stay and treatment, systemic issues that meant I didn’t really know who to address the feedback to. I had known about Patient Opinion [now called Care Opinion], that her experience would be public and that the hospital would be required to respond publicly. It seemed like a good way of raising the issues that we had, and it was. We received responses from the EDs of the services involved, which meant that the people at the top were aware of what had happened and were willing to make changes. Patient Opinion gave us the chance to tell our story, for it to be read by people who have the power to make changes and for us to feel like we were heard.”

How to make a complaint

Feedback can be a powerful way of improving the health system for yourself and others, however we recognise it can sometimes be a difficult or emotional path to travel. Health Consumers’ Council can support you through this process.

You can find resources to help you write a complaint to a hospital and apply for your medical resources on our Useful Links for Self Advocacy page.

The first step in making a complaint is to be clear about what the problem is and what exactly you are making the complaint about. This is sometimes called identifying the key issue.

You may then want to call the health service to ask about their complaint process (how you would go about making a complaint). Avoid going into details of the complaint unless you are sure the person you are speaking to is the one who receives complaints.

In some cases, we recommend making your complaint in writing. That way, someone becomes responsible for writing back to you, and your complaint is more likely to find its way to the right person or place for action. Always phone the service first to find out the name and title of the person you should write to. When submitting a complaint in writing, be firm but polite and keep your message to the point. If you do not have access to a computer, do not be put off – handwritten letters are fine.

Most, if not all, complaint agencies will allow you to have an advocate (someone who can act on your behalf) to help you put your complaint into writing if you are not confident about doing so yourself.

Health Consumers’ Council provides an advocacy service to assist health consumers in making complaints. We are an independent consumer advocate organisation and are able to support you through the process.

*This article was originally published in Health Matters 

By Dr Andrew Leech FRACGP MBBS BSc DCH

In 2019, Dr Andrew Leech was recognised for his commitment to patient-centred care as winner of the Health Consumer Excellence Award for Compassionate Care. Dr Leech is passionate about family health and the integral role of a GP, and believes GPs are in a unique position to offer support to patients. Here, he talks about the art of compassion in healthcare.

How do patients like to be understood and treated when they see a medical professional?

We are generally taught, as doctors, that taking a good history about symptoms, performing a physical examination, and offering evidence based, relevant treatment, makes a good doctor.

I now realise that medicine is a true blend of art amongst all the science. The balancing act between really understanding the patient as well as treating them is not an easy one. Medical schools are trying harder to teach this concept, but it comes with time, experience and feedback from your peers and from patients themselves.

The skill of understanding the person as a whole, and not just for their presenting complaint, probably takes a lifetime to master. We are complicated beings with many facets to what drives us. We depend on countless external and internal stimuli to function and thrive.

Despite all this, I have learnt that there are some beneficial skills that give patients hope, even when it may appear that all hope is lost. Active listening is a good start, but listening with empathy, understanding and compassion helps us to not only grasp the problem and build a therapeutic relationship, it helps guide treatment.

Patients definitely open up more when they are faced with some level of kindness. These may not seem like skills as much as a core human emotion that we all have the ability to possess. But the problem is we are busy, and amongst chaotic days filled with challenges it can be mentally fatiguing being a doctor, and therefore the emotional side of medicine can be stripped away.

I often feel we owe more than just our attention to patients. The Latin origin of the word doctor is ‘to teach’, and this rings true as we try to help educate our patients on the human body and why something might be changing for them. I think doctors can get caught up using quite funny language. We forget that this makes little sense. I am often caught out with this, only the other day the patient looked puzzled when I said they had a ‘carotid stenosis’. Part of the art of medicine is in the communication and wording of how we educate, therefore it may take different words to get a point across, diagrams, handouts, even seminars or workshops, online resources and social media.

Patients are becoming increasingly ‘educated’ in this era of information technology. I feel my role in this is to weave through the information and present the most logical, evidence-based solution. Adding compassion to this discussion means patients often feel ‘you get them’, or at least that you’re listening. We may not have all the answers, but if we walk this journey together then life might be just a little bit easier.

*This article was originally published in Health Matters 

By Pip Brennan, Health Consumers’ Council Executive Director

My Health Record

Since January 2019 when the opt-out period ended, 90% of Australians have ended up with a My Health Record. Like all our state counterparts, we were funded by the Australian Digital Health Agency to circulate information materials on My Health Record via our networks. We have noted that some social media posts have attracted concerns from consumers, and have communicated these to the Australian Digital Health Agency.

We also undertook a survey to explore the issues important to consumers, and gain an understanding of real-life experiences of using My Health Record. We are currently compiling the results of this survey, and you will be able to find them on our My Health Record web page soon.

On 11 December the CEO of the Australian Digital Health Agency, Tim Kelsey, announced his resignation. A new appointment will be made early next year.

WA’s new Digital Health Strategy

As noted elsewhere in this edition, this strategy was released in October 2019, almost a year to the day of the last stakeholder engagement HCC was able to be part of. Now the Strategy has been released, it’s clear that the main goals require an electronic medical record. The scale of this undertaking is not to be under-estimated. The WA Health Information and Communication Technology Consumer Reference Group re-convened in November 2019 and there are hopes for more robust engagement and a co-design process with consumers, clinicians and administrators to drive this project forward in the way it needs to go.

Data and Privacy

Meanwhile, WA’s Department of Premier and Cabinet has completed the Privacy and Responsible Data Sharing consultation, and submissions received are now being analysed and legislation drafted. It may surprise you to know that we are the only state without privacy legislation.

I contributed to an independent submission which was supported by Professor David Watts, former Victorian Privacy Commissioner, and Dr Bridget Bainbridge, whose inputs were kindly supported by the Minderoo.

The submission argued for an innovative approach to the drafting, rather than merely “cutting and pasting” other state’s legislation, first written in the 1980s. Our world has changed beyond recognition since then, and Europe has led the way in developing the General Data Protection Regulations which seek to uphold civil rights. Th argument was made to aim for something along these lines that will allow us to more easily participate in international research.

Data is the new oil

It has often been noted that three enormous enterprises, Amazon, Google and Facebook, do not charge for their products. That is because the data they harvest from their platforms is far more valuable and marketable than membership fees. It is vital that as citizens we do not “give away the farm” when it comes to our health data. There have been alarming precedents in other countries where health data has been swapped for “innovation” – so that the costs of developing a platform, for example, are not met by the public purse. But what is the cost of this in terms of loss of privacy, in leaving ourselves open to having our data re-packaged and sold back to us?

Meanwhile, there is a confusion in the public mind about how much data is shared between government agencies. There is an expectation that data is shared much more than it really is. The excuse of “privacy” is often invoked by government agencies keen to control what information is shared and avoid contentious issues reaching the light of day, or stymie the ability of people to seek redress.

While in WA it was noted that our lack of privacy legislation is hampering data sharing, in all other jurisdictions where privacy legislation exists, it is invoked as a reason not to share data. As always, culture is a key driver of how policy and legislation is enacted.

In Australia there is no independent, publicly funded app for My Health Record. There are three commercial providers who provide apps, and as we saw in 2019 with the Health Engine debacle, in some states our data was being on-sold to third parties – which consumers had consented to with one click, without any real understanding of what we were consenting to. The phenomenon of signing away our rights is endemic. The Norway Consumer Council worked out that it would be quicker and faster to read the New Testament than it would be to wade through the terms and conditions of 33 apps on your average smart phone.

What to do?

As always, a “buyer beware” approach is important. If something is free (Facebook for example), then you’re for sale. Many of us make this call because what we receive is worth the (largely invisible) cost of obtaining something we want right now, which is the functionality of what the app offers.

Does this topic interest you? Would you like to stay in touch with projects and initiatives in data and IT, email us at info@hconc.org.au with Digital Health as the subject line.

You might also want to listen to this episode of Big Ideas exploring this complex topic.