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"Lived experience cannot be gleaned from a book, it is a visceral knowledge."

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People talking about mental health

"Nothing about us, without us" is a common request among people living with complex mental health issues. But all too often, systems and processes are designed without partnering with people with lived experience.

Ahead of a recent event hosted by the Parliamentary Friends of Mental Health, we asked our SANE Ambassadors three key questions about the mental health system in Australia - and let politicians in Canberra know what they said. Here* are some of their answers ...

Question 1: What have been some of the challenges you’ve faced in accessing formal support (i.e. from a health professional or community service) for your experience of complex mental health issues?

"The biggest one for me has been the financial challenges of accessing formal support. There is very little low-cost/no-cost accessible support for adults of the age of 25 with complex mental health issues. A few years ago, I found myself in a situation where I needed to leave full-time employment to focus on my mental health. This left me with a significant decrease in income, having gone from a full-time paycheck to unemployment benefits. My parents were not in a position to support me financially, and often my need for formal support was a lower priority to everyday living expenses such as rent, bills, food etc."

"Aged mental health is an issue I now face. Public facilities for those with a mental illness, and who are aging, are grim. They don't have rehabilitation as their goal and tend to see people through a negative lens. Older people with a chronic mental illness are not sexy, don't garner as much attention as young folk and are perceived as a nuisance."

Older woman chatting with doctor

"This is a very interesting question to me as I think the challenges can vary so dramatically depending on your life situation. I am in the very privileged position of having financial security, a supportive partner and network and even at my most unwell I am articulate and able to communicate my needs, opinions, etc. (except for a few episodes). And even I have found it challenging to find the right service or service provider.

One that stands out for me, and one that I know a number of my peers have also faced, is finding the right psychiatrist or psychologist. It can be really hard to find the best fit for your condition and personality and there really is limited guidance to help you find the right person. It's also very expensive to utilise these service providers. I shudder to think how much I have spent on my psychiatrist over the past four years (He is worth it though!). If you do not have the financial resources you can be left with either not ideal support or none at all."

"Clinician lack of experience in providing care for people with complex mental health alongside other intersections, in my case disability. I come from a multi disability family – all three of my children have multiple disability diagnoses, and I myself am Autistic as well as having bipolar disorder and other mental health diagnoses. I need these pressures and intersections to be understood in order to receive care that is appropriate.

This was unfortunately never appropriately addressed when I was within the emergency care programs (ACIS) and local community mental health clinic. I received patronising and simplistic advice on how to manage and cope with my bipolar disorder within the realms of my parenting experience– “just make sure you take a break from the kids,” “try having a relaxing bath.” No understanding that there are just areas of my life and pressures that are unavoidable, and require additional, targeted and specialist care."

"Because I am a functional person, professionally and personally, I am often faced with health professionals not really engaging with me regarding my support. Because I don’t always present as someone in distress, I am sometimes pushed down the triage pile as there are others who need more immediate help – which of course is appropriate, but it is part of the challenge of representations of mental health."

"In the 'physical illness' hospital system for example, maternity wards are separated from cardiovascular wards - recognising that the conditions are different. So why can't we have wards that are separate for drug and alcohol, psychotic illnesses and Occupational Trauma and Personal Trauma wards?"

Question 2: How do you think these challenges could have been overcome?

"More funding!! I was very disappointed to hear in the recent royal commission that funding that had been allocated to my local mental health unit had been redirected to other parts of the hospital despite the mental health unit being in dire need of funds!!"

"More government funding into mental health services for people over the age of 25, especially in relation to complex mental health issues.

Higher Medicare rebates (and more subsidised/free sessions) for those with complex mental health issues (often at times I was seeing 2-3 people for my treatment and it all adds up so quickly). An easier process to be able to access superannuation funds for mental health treatment or provide no-interest loans - private health insurance for psychiatry is not affordable to most people."

"These problems could be overcome through appropriate training and stigma awareness campaigns targeted to health professionals, particularly frontline emergency service professionals and triage staff."

"I think authentic representation of lived experience in overseeing program designs, implementation and review is vital to keeping systems accountable and appropriate. Lived experience simply cannot be gleaned from the pages of a book, it is a visceral knowledge."

Man sitting on bed, looking pensive

"A complete overhaul of our mental health system, including implementation of targeted clinics/programs. A few years ago the state government defunded The GAP Clinic, which provided specialist psychiatric support to people/families with disability. This clinic ensured that people with disability received support and care that was grounded in a specialist understanding of disability. It has been a huge blow to the disability community to lose such a vital service and has forced people to attempt to seek service from the private sector, which is incredibly difficult given the intersection between disability and poverty."

Question 3: If you were designing the best mental health system in the world, what would this look like for you?

"Design facilities that offer curative therapies, and meaningful activities that stimulate cognitive processes. There would be sensory rooms, therapy dogs, creative activities, gardens, space and places to find solitude, enough time to find one's equilibrium, and enough staff to allow quality time with patients. Clinicians who were interested in the patient and not just medication prescribers; nurses that are not just medication monitors. No fishbowl for nurses to hide in."

"I think I would have a much more user-friendly service. Where people were listened to when they needed it, day or night. Where there were beds for everyone who needed them, when they needed them. Where staff had better training to understand what the people in the unit were actually going through. Where there were activities that engaged and encouraged people to grow within themselves. And I think private bedrooms and bathrooms are important for greater dignity. I would see artwork on the walls by the people in the unit. Most of all the people in the unit would be believed and treated with compassion and dignity."

People doing art

"Ability to fund patient having to take time off work, [and] ability to fund activities that whilst not directly linked to patients illness can be very hard to do when ill (eg. child care, housekeeping, bill paying, etc.). We are great at recognising that Bill with the broken leg needs someone to walk his dog while he recuperates but we are less great at recognising that Rose with depression really struggles with caring for her kids when depressed. 

Incorporating patients family and support network into care and care plans in a meaningful way (if okay with patient). And of course universal access to best quality care for all. I have been admitted to both public and private hospitals for my condition and let me tell you, they are light years away from each other in care quality and services. This is due to resourcing and funding. And it's just not fair that people are excluded from certain levels of care, because of their financial position."

"I envisage the best mental health system would offer treatment without stigmatising attitudes, one that genuinely acknowledges distress and validates a persons’ feelings and can offer assistance rather than judgement and advising a patient of what they can do to alleviate their distress and not to focus solely on what will NOT work."

"Program designs, implementation and oversight that have numerous lived experience representation from people of differing intersections. No token representation, but real inclusion and respect for the vital role that lived experience knowledge brings."

"Health professionals all have the best of intent, and I honestly believe are doing the best they can based on the information they have. I think it is important that people aren’t looked at in isolation, based on single events – the ability to share history and have consistent engagement would play a huge role. Not only in the care for someone with mental health issues, but also, to assist with some of the external perceptions of mental health."

Psychiatrist speaking with patient

"A seamless system in which support doesn’t drop off after the age of 25 years. One that looks at complex mental health support across the whole lifespan. Early intervention is crucial, but many people require complex support throughout their lifetime. [...] No capping on mental health service rebates. People with complex mental health conditions require more than 10 sessions per year. The current system has huge gaps and forces people to either only be able to address issues in a few months, or to try and ration out appointments regardless of the need for them."

"A facility where I can experience consistency, individuality and right of self-determination.  A system that pro-actively recognises life stages, risk factors, and seeks participation with the health system. Like [the] 50 plus breast screening/bowel cancer diagnostic kit being mailed out to me - I think the health department needs to recognise life stage triggers such as loss of employment, people living alone, people with past history of mental illness...

[We] should receive regular communication to check health status. The level of support post breast cancer treatment that my friend received makes me feel I wish I had a double mastectomy instead of complex mental illness. A system that at the very least recognises the need for the SAME level of support would be a good starting point." 

"More activities need to be run on the ward to keep the patients happy and engaged. There needs to be more nurse/patient engagement instead of nurses being stuck in nurses station doing endless amounts of paperwork. The use of more Peer Workers in the wards would be great as well."

"Anyone, regardless of their socioeconomic background would have access to the care they needed. The only role of the GP in managing mental illness that required medication as part of its management, would be as a referral service to psychiatrists and psychologists. There is a reason psychiatry is a medical specialty. I wouldn’t go to my GP for open heart surgery any more than I would expect my GP to treat me with psychiatric medications.

I would extend the number of free or subsidised psychologist’s sessions way beyond ten. Stopping sessions at ten, regardless of how the patient is going is like putting a cap on chemotherapy treatments for cancer patients regardless of whether they have had the best response they could have.

But if I had to summarise in a couple of sentences what the best mental health system in the world would look like for me it would be this: I would no longer see people I love and people I talk to suffering and not having the best possible outcome they could, the outcome I know is possible because of my experience with private mental health care. If the best possible mental health care system in the world existed, I could give up mental health advocacy, because there would no longer be any need for it."

Young woman with blue hair looking happy and hopeful

If you or someone you know needs support, please visit the SANE Help Centre today.

*Please note that some answers have been shortened here.

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