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Building trust in mental health care by improving health literacy among clinicians, health workers

Introduction by Croakey: New South Wales Mental Health Commissioner Catherine Lourey sounded an important, and tragically prescient warning last month, launching the Living Well in Focus 2020-2024 strategic plan and noting that much had been done to address mental health in the state over the past decade.

“But more needs to be done as many communities across the State still feel the impacts of bushfires and other disasters just as the impacts of the COVID-19 pandemic will continue to affect people’s mental wellbeing for some time,” she said.

Now many of those areas hit by bushfires are struggling with devastating floods, prompting warnings from the NSW Premier and others that many people will be at “breaking point” .

But as well as greater support, the mental health sector needs to provide better informed, targeted and holistic support, Lourey writes in the article below, outlining the Commission’s Health Literacy Initiative, which has been invited to join the World Health Organizations’ global network of health literacy projects.


Catherine Lourey writes:

NSW Mental Health Commissioner Catherine Lourey: Supplied

Being the Mental Health Commissioner of New South Wales is a humbling experience. Listening to the stories of people brave enough to share is also a privilege.

About 18 months ago, the Commission began a series of community consultations across the state to listen to the community and learn about their experiences, challenges, and hopes.

We held more than 60 consultations, with the last held in Wilcannia in February 2020, just before NSW went into the first pandemic lockdown.

The first  was in Bega on the south coast.

Many people shared their stories that day, including one woman who had post traumatic stress disorder (PTSD) who had come to the consultation early to seek me out.

We sat together at a table in the corner. She brought notes to refer to and had a supportive friend by her side.

She told me she chose to sit in a corner so as to see every single exit. She knew exactly how long she could stay in a crowded  room.

And then she told me what she had bravely left her home to tell me.

She, and thousands of men, women and children like her, are the reason I do this job. They are the most amazing people who can live the most difficult lives. They show their resilience each and every day. And as a society we have a collective responsibility to assist them on their recovery journey.

The Commission’s vision is to ensure that people have the best opportunity for “good mental health and wellbeing and to live well in the community on their own terms, having the services and supports they need to live a full life”.

We spoke to more than 3,000 people across the state as part of our consultations for the mid-term review of the 10-year NSW Living Well mental health strategy.

We needed answers to three questions about mental health in NSW: what works, what doesn’t and what would you like to see changed?

One of the most important issues to emerge from our consultations was that people with lived experience of mental health issues said they wanted their health workers to understand their mental health issues better.

Focus on clinicians, health workers

This feedback helped shape the Health Literacy Initiative (HLI), a Commonwealth-funded project that involves three universities and more than 50 organisations.

It is aimed at those who work within the state’s Primary Health Networks (PHNs) and their partners, including Local Health Districts (LHDs) and community managed organisations.

The Initiative brings together those with lived experience of mental health issues, carers, and a wide range of mental health experts, workers and other health professionals to identify ways to improve services. Most importantly, it puts user-driven ideas and solutions into practice.

Whereas most health literacy projects are about educating the public to help them understand their own health needs, our initiative focuses on enabling a greater understanding about mental health and the physical health of those living with mental health issues among clinicians and health workers.

Put simply, health literacy isn’t about reading and writing. It’s about health knowledge and understanding.

It means clear communication about how, when and where people can access help and care when they need it most. It supports people to make more informed choices about both their mental health and physical health care.

Lived experience at the centre

Our Initiative aims to support that important relationship between a health worker and their client, to achieve the best holistic health outcomes for the person.

This important Initiative will add to the toolkit that health and social support workers can use.

It’s not about creating something like a new performance standard but about creating a new set of guides and resources that health and social service workers can draw upon.

This health literacy toolkit then becomes more useful as each worker can draw upon it, given their own experience and professional setting, whether in an LHD, PHN or community managed service.

This approach is more responsive to each therapeutic conversation.

As a co-designed project with lived experience at its centre, this fundamentally guides us in developing a set of ‘best practice’ resources that take a whole of person view for the benefit of everyone with mental health issues.

Achieving that comes back to the idea of holistic care.

We know that many health workers practice a whole of person approach, but when we also know that people with severe mental illness continue to have a reduced life expectancy, we need to amplify our efforts to support workers to get the best overall health outcomes for their clients.

If you have a mental health issue and go to a service provider, they should be able to see you as a whole person, and say: ‘OK, we have discussed how your mental health has been over this past fortnight, but I’ve also noticed that lump on your forearm. Have you seen someone about that?’

These discussions are important because  people with mental health issues have, for example, higher mortality rates of cancer than the general population (although not a higher incident rate of cancer).

Diagnostic overshadowing

Often mental health issues can overshadow physical health needs. So, clinicians might see someone as presenting solely with a mental illness rather than seeing their whole of health needs.

That overshadowing might come into play in a scenario such as this.

Let’s say that someone presents with mental health issues but also says that they are suffering from chest pain and has done for several weeks. The health professional might say, “that’s just your anxiety playing up. Let’s see how we can help improve that.”

But it ends up that they have an undiagnosed chronic heart problem.

That’s where the health literacy project really comes into play.

Clinicians and health workers need to share a common language to describe the whole person, not just a single aspect of them. That is why health literacy is so important.

The concept of a shared language to address the whole person is also important in terms of the reliance that a person places on the health worker, in identifying possible treatment pathways.

They often rely on the health worker to say, ‘Well, that heartburn you are experiencing along with the other symptoms may be pointing to something else. Can I help you to find someone who could give you a better understanding of what’s happening here?’

Normally, health literacy is about helping the population to understand themselves better.

However, we are saying that health workers and service providers should understand that in terms of both physical health and mental health, there is no wrong door.

Wherever you go as a patient, you can reasonably expect the person looking after you to have a level of knowledge that will help them guide you, as the patient, to the next step.

Studies vary in their findings but in general it’s been shown that people with mental health issues have reduced life expectancy by 20 years in males and 15 years in females. And if you are an Aboriginal person the impact on your overall life expectancy can be even worse.

Health literacy helps a health worker to tune in and listen to what is happening with a patient on both a psychological and physical health level. And it helps the patient tune in and understand, too.

People often tell us that they have poor experiences with a service in which they are misjudged, or experience passive or indirect discrimination, or are seen through the prism of stigma. As such, some people don’t want to reach out, even though they may be in distress.

What that means is they delay seeking help. We all hope that by improving health literacy and having a common language, that we begin to build trust. We hope that people will begin to say, their service provider listened to them. They didn’t say: ‘that’s your psychosis’ or ‘that’s your paranoia’. And with that trust will come better overall health outcomes, enabling people to live well.

Resources developed throughout the three-year Initiative will be freely available on the Mental Health Commission of NSW’s website. This initiative has been welcomed by the sector, with PHNs in NSW having opted in, along with Local Health Districts and community managed organisations.

The Commission’s Health Literacy Initiative has been invited to join the World Health Organizations’ global network of health literacy projects.