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Research reveals priority concerns of people with mental illness

Efforts to tackle discrimination and ensure more appropriate use of medication are priority issues for people with mental illness, according to research presented at the recent Equally Well 2022 Symposium.

Symposium participants also heard about other research highlighting the importance of ensuring people with mental illness have equal access to vaccinations, reports Cate Carrigan.

Bookmark this link for ongoing reports from the symposium by the Croakey Conference News Service.


Cate Carrigan writes:

Keys to improving the life expectancy of people with mental illness include amplifying the voices of those with lived experience, tackling discrimination and stigma, and ensuring more informed use of medication.

These were among the key themes at the recent Equally Well Symposium, which brought together clinicians, consumers, service providers and researchers to discuss successes and barriers in turning around the poor health statistics.

The importance of lived experience voices was highlighted in the preliminary results from an Equally Well/Healthtalk Australia “Physical Wellbeing and Mental Health” research project, which surveyed 33 mental health consumers in metropolitan and regional New South Wales and Victoria.

Associate Professor of Law at La Trobe University, Chris Maylea, told the symposium that the two ‘overarching’ concerns of participants in the joint La Trobe, RMIT and Charles Sturt University project were discrimination and the use of medication.

“Everyone said they’d been discriminated against, with comments such as: ‘I won’t go near the health service because they don’t take me seriously’,” said Maylea.

Headshot of Associate Professor Chris Maylea
Associate Professor Chris Maylea

Those who had experienced compulsory treatment didn’t trust the health system and the impact of “force, coercion, blame and stigma” were all very real in the results of this study.

When some had raised concerns about their physical health while in mental health inpatient units, they had been dismissed as being “delusional”.

Such diagnostic overshadowing was another major concern for participants.

“There just seems to be a lower bar when looking after the physical health needs of people with mental health conditions,” Maylea later told Croakey.

“Health professionals will allow for a level of squalor, high smoking rates, or poor nutrition in mental health consumers which they would prioritise in any other patient,” he said.

The use of medication was another major issue for participants, who questioned the prioritisation of eliminating ‘mental illness symptoms’ over any long-term side effects.

Consumers repeatedly told of feeling as though ‘it didn’t matter if it (psychotropic medication) was going to take 10/20 years off my life so long as I could be discharged from the hospital’.

Many participants said the medication was the major contributor to their poor physical health.

It wasn’t necessarily the immediate side effects of the medications but the long-term and indirect impacts, such as tiredness and drowsiness, that undermine the ability to exercise or do everyday tasks, said Maylea.

Participants identified the major failings of the health system as poor coordination of care (including a lack of services), dismissal of health concerns, and a lack of trauma-informed care.

Diverse conditions

Slide from a presentation showing the diversity of health conditions reported
Showing the diversity of health conditions reported

Study participants reported a large range of illnesses, from issues with fertility, trans-affirmative healthcare, epilepsy, traumatic brain injury to cancer.

But Maylea said many didn’t highlight the issues often prioritised by clinicians: issues such as cancer, smoking or exercise.

The results showed the importance of talking to people about their lived experience and that while cardiovascular disease and cancer are major contributors to early death in this cohort, participants lived with diverse and complex diagnoses.

“It points to the comorbidity in this cohort – people who have negative health experiences will often have many and multiple negative physical and mental health diagnosis throughout their lives,” said Maylea.

The results highlight the need to expand physical health priorities for those with mental illness beyond the common targets of cancer, cardiovascular diseases and diabetes to take in multiple diagnoses over many years.

“I think there’s a bit of a blind spot about the harm that the mental health service can do, particularly the side effects of medication, so clinicians prefer to focus on things consumers are doing – like smoking or drinking too much or not exercising.”

Empowering consumers

Maylea suggested clinicians may need to look at how the mental health system might be contributing to factors, such as powerlessness and poverty, stigma and discrimination, that might drive someone to substance use or not having the self-image to go to the gym or the park.

He said participants had just as much commitment to their physical health as anybody else, but their lifestyle experiences, homelessness, or poverty made that difficult.

“Hopefully our resource will address some of the diagnostic overshadowing and convince clinicians to do things differently and understand that people with mental health conditions do care about their physical health,” he said.

It’s about “empowering consumers to have honest and difficult conversations with their doctors”, to be aware of their rights in regard to the medication they are taking and to be part of the “decision-making process”.

“It’s one thing to give a list of side effects of medication and another to have a conversation about how that could be balanced with the potential physical health side effects and what can be done to mitigate those,” he said.

The Equally Well/Healthtalk Australia Physical Wellbeing and Mental Health resource will be available later this year. It will include audio, visual and animation with voice-overs of participants talking about their experiences of physical healthcare in the context of using mental health services.

Hospitalisations higher

The conference also heard that people with mental illness are more likely to be hospitalised for vaccine-preventable illnesses and to undergo emergency surgery than the general population.

The findings were detailed in two separate presentations by the Director of NSW Health’s InforMH team, Dr Grant Sara.

Sara told Croakey a 2021 study found people who had recent contact with mental health services had a four to five times greater chance of hospital admission for vaccine-preventable conditions, such as respiratory illnesses, hepatitis, and influenza.

There were two possible reasons for these findings, said Sara: that people with mental illness choose not to get vaccinated, find access difficult or are not being supported to get vaccines; or that they are getting more severe forms of illness.

Sara hopes the findings can be used to promote awareness across the health service to boost vaccination rates but that this “needs to be based on consumer choice” and ensuring people have the information they need.

“We want to make sure that those living with a mental health condition have the same right of access to a range of vaccines across their lifespan as others.”

While COVID-19 admissions weren’t part of the study, Sara said the higher admission rates for vaccine-preventable conditions for mental health users showed the importance of prioritising this group for COVID-19 vaccinations.

Sara also pointed to the vaccination lessons of the pandemic, where health services reached out to communities and did “good, flexible things to get people vaccinated … setting up relationships with pharmacies or other providers”.

“The evidence tells us that to reach anybody with complex problems or from a background of disadvantage … you need good, integrated care, with connection between health service and the GP, accessibility and affordability,”.

The study on emergency surgery rates – undertaken by University of Sydney medical student Julia Hamer and yet to be published – found overall higher rates of surgery for people with mental illness and substantially elevated rates of emergency surgery, up to three times as high as the general population, depending on the procedure.

Sara stressed more work needs to be done to determine the causes of the increased rate of emergency surgery and what it means in terms of patient outcomes, with earlier research already showing mental health consumers have poorer post-surgery outcomes.

Inclusion essential

The importance of inclusion as a precursor to wellness was brought home during the first of two panel discussions at the Equally Well Symposium. Sharnie Roberts, a Widjabyl Wia-Bul woman who works on the WellMob project at University Centre for Rural Health, stressed the need for culturally sensitive mental health services.

Roberts, an Indigenous Youth Engagement Officer for Headspace Queensland, said the organisation wanted to reach out to communities in an appropriate and sensitive way, and that placed a lot of responsibility on First Nations people in roles such as hers.

She stressed the importance of strengthening and sharing resources, building relationships in a collaborative way, and advocating different ways of working with “our mob because we have our own cultural tools and healing methods” that should be used more in mainstream services and by non-Indigenous practitioners.

“This is how we will get better health outcomes for our mob because it’s a part of our identity and our self – it’s more inclusive and holistic,” she said.

Sharnie Roberts

A powerful learning space

Maggie Toko, the Assistant Commissioner Lived Experience and Engagement at the Victorian Mental Health Complaints Commission, said she was optimistic about the future.

“The space for inclusion for lived experience is huge at the moment, especially in Victoria following the Royal Commission into mental health services,” she said.

For Toko, the challenge is upskilling those with lived experience to fill those roles.

Toko told delegates of the power she had drawn from owning her “living experience” of mental illness, saying: “It’s a struggling space and it’s a learning space and being upfront about [it] … gives you a power that no-one else can give you.”

“I embrace that power because if I don’t, I’m going to crawl into a hole somewhere – and I refuse to do that,” she said.

Maggie Toko

More news

On Twitter check out the discussions: #EquallyWellAu22

Also follow this Twitter list of participants.

Bookmark this link to track the Croakey Conference News Service coverage. Also see our coverage of the 2019 event.


 

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