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Personal Stories

The Commission approached organisations in the sector to invite consumers and carers to share their experiences with us. The following stories exemplify where person-centred approaches have either been effective or have been needed.

09A carer’s story – the importance of involving families and carers

In more than 12 years of our family’s involvement with the private and public mental health sector, the occasions of feeling left out of decisions about the care of our (now 30-year-old) son have been many and varied – some resulting from sheer rudeness and arrogance on the part of professionals, to situations of incompetence, disregard or inertia.

Where does one begin to recount these, especially when it is best to focus on present concerns and where things are going right, not wrong?

In hindsight, ‘stuck’ systems and practices may have accounted for the virtual closed-door policy a private psychiatrist implemented in the beginning of my son’s treatment. It was offensive, unhelpful and hindered progress.

Later on, a public hospital care team, discharging my son without any prior notification to us (his parents), was incomprehensible, especially given our willingness to support and collaborate with them from the time of his admission.

A private hospital’s wholescale change of my son’s medications – from two (which were working) to seven, which caused an unnecessary kidney condition – occurred without any consultation with us.

And, most recently, a complete absence of communication with us, from a private mental health clinic, delayed and complicated my son’s further treatment and housing options.

The list could go on and on, but I’m pleased to say it won’t, because we have found significant improvements in both the private and public mental health sector over recent years.

There is an authentic ‘family inclusive’ approach being implemented. It’s largely up to the individual efforts of clinicians, mental health practitioners and support workers that these family-inclusive practices are occurring, but they are.

I think there’s been a widespread ‘change of attitude’ that families and carers hold valuable insights, that they are there when the going gets tough, and that they bring a strong foundation of love and care.

01Daniel’s story – workplace stigma and discrimination

I studied psychology at university. During a lecture on psychopathology, I resonated strongly with the diagnostic criteria for borderline personality disorder (BPD). At this time, I had been seeing a psychiatrist for my escalating depression and ruminative anxiety. During one session, I asked why I had not been diagnosed with BPD, given my strong identification with the criteria. The answer was more or less tactful, but the sense I got was that people who have BPD are ‘crazy’, treatment-resistant and manipulative.

After hearing this, the safe space otherwise held for me evaporated. I felt less willing to speak honestly of my traumatic experiences, and I eventually stopped showing up for my appointments. After all, if I identified with a label synonymous with ‘crazy and unfixable’, what use did I have for a psychiatrist whom I couldn’t honestly relay my turmoil to, and who could not offer me any hope of relief from?

Because I did not overtly know that a stigma existed among medical professionals towards people with BPD, I internalised the experience and automatically assumed that the problem lay not with their prejudice, but with me.

But things have improved since this initial experience. I started attending support groups for people like me, and was linked in with a Personal Helpers and Mentors outreach worker who shared his own experiences with prejudice from those in the clinical sector. This really helped. Because I admired him, and because he was using his own lived experience in a paid role to help people just like me, I slowly began to feel hope again. I felt less messed up, and a healthy anger developed towards the psychiatrist, and those like him, who perpetuated an unhealthy and unhelpful myth that recovery is non-existent for the ones who are ‘too hard to fix’.

I can’t say I’m grateful for all of my experiences along the recovery journey, but I do know that without them I wouldn’t be the compassionate, well-informed and passionate advocate that I am today.

02Rachael’s story – the power of connection

As a young person, I received mental health support, in both public and private institutions. Diagnosed and hospitalised with severe anorexia nervosa at the age of 15, I was hospitalised in a public psychiatric ward. My experience of treatment has been both challenging and helpful.

A few years after this experience I did, however, find a social worker through a Community Health Centre who helped me significantly. Her warm, empathetic and understanding approach through narrative therapy was a major reason I recovered from anorexia, suicidal thoughts and clinical depression. We worked together for more than 3 years, and in that time she encouraged me to share my experiences and let go of shame and unforgiveness. It was incredibly helpful because she didn't assume quick fixes to embedded and ingrained problems, instead committing to a long-term connection with me that assisted me to work through many years of unresolved issues, such as childhood abuse. Her empowering and kind approach changed my life for the better and assisted in many wounds being healed.

I found that empowerment was not at the heart of many treatment approaches I received. Resilience was not acknowledged, but my social worker challenged this greatly. Her ability to draw out potential from brokenness changed things for me. She helped me imagine a future, not just see every deficiency and issue I had as an individual. The successes and challenges from my experience of the mental health system have wounded me, but it has also helped me to realise wounds can be healed.

04Sarah’s story – recovery plan

In the early stages of my eating disorder, my care was managed primarily by my general practitioner. I saw a number of different psychologists, and it took a while before I found one who I established a rapport with.

Once I began outpatient treatment, I had a whole team of health professionals to help me. Staff at the day program included psychologists, mental health nurses, social workers, a dietician and a psychiatrist. They ran a number of different group sessions, and covered coping skills, body image, problem solving, goal setting, food challenges and art therapy. It was a comprehensive program which was immensely beneficial to me, as it addressed the underlying causes of my eating disorder rather than focusing solely on weight restoration. One of the staff members was also designated as my key support worker, who was able to work with me on a more one-on-one basis.

While in the day program I continued to see my general practitioner and personal psychologist, who were provided with weekly reports on my progress from my key support worker. This provided really important continuity, as they would continue to support me once I was discharged from the day program.

Being in charge of my own care was really important. I am grateful to have worked with health care professionals who trusted me to make my own decisions and set my own goals. They allowed me to be in charge of my own recovery, and as a result I felt safe and supported.

05Karen and Phil’s story – a parents’ perspective

Prior to our son’s illness we had very little contact with the mental health system. It’s such a convoluted system and very difficult to find the right people to help. We thought people were there to help you. As carers of our son we have been totally ignored by the mental health industry on decisions made on behalf of our son. It’s completely demeaning to hear professionals tell you they know your son better than you do. There is a lack of understanding of what parents go through.

However, where our son works, his immediate supervisor has been wonderful in supporting his recovery. This support came out of left field. Four years ago we found it difficult to get a clinician to work with our son who has a dual diagnosis which is difficult to treat. Our family and friends didn’t want to know us. They treated our son’s illness like a disease that can be transmitted. For those first 15 months we had no life and we weren’t sure what would happen from day-to-day. We didn’t eat or sleep and experienced enormous isolation. But it has started to get better. Our son is back at work 2 days a week. His supervisor has been really understanding and recognises it takes time returning to work. Return to work conditions for physical health and mental health are supposed to be the same, but the reality is return to work for mental health conditions are often longer. It requires small steps over time.

06John’s story – delayed intervention

I suffered profound depression from about the age of 10. It was something that was with me 24/7. I made no contact with the mental health system until the age of 75 (4½ years ago) when I came into contact with a clinical psychologist, who put me on a cognitive behavioural therapy course, and after a year of hard work I was free of it.

My family were, to a large extent, shielded from the effects of my depression, expressing surprise when I told them about it at age 75. However, in the wider world it turned many people away from me. Sometimes they were offended by a stupid remark I made or one of my inappropriate responses. At times they would ignore me and the valid advice I would try to give them believing that, because of my nervous manner, my ideas were not worth considering. As a result, I would turn away from social contact and business opportunities because of my preconception that it would all fall apart in the end.

I am now ’happy to be me’. Over the past 4½ years I have made a significant contribution to the Men’s Shed movement on the Central Coast. Most of all I have developed friendships which have given me much pleasure. That tormenting feeling that there is ‘something wrong with me’ has evaporated. Of course, I still experience the normal pressures of everyday life just like everyone else, but the difference is that they no longer throw me into the depths of despair.

07Danielle’s story – integrated services may help save lives

My youngest brother passed away on 1st November, 2015, aged just 32. He suffered for many, many years with a severe mental illness and other severe health-related issues stemming from his mental illness. Unfortunately, we don't know what mental illness he suffered as we were given no rights to his information. A person with a severe mental illness is able to choose whether or not a carer can have the file information provided, including their medication list.

Unfortunately, he was passed down the line from doctor to doctor, to case worker, to psychologist. Sometimes they would even forget his appointments. He never felt a connection to any of them, therefore never wanting to open up to them when he felt relatively ‘normal‘, not to mention when he was feeling fragile, sick, on edge and having psychotic episodes.

With his passing I now feel drawn to stand up for other people out there like my brother and myself to help people become more aware of mental illness, and that it can happen to anyone. To try to reduce the stigma associated with mental illness, and also that it needs to be talked about openly and honestly, as mental illness is unfortunately not like cancer or a broken bone. It’s invisible to most.

08Sarah’s story – mental health care in regional Australia

I grew up in regional Australia, in a small town. I was a straight A student, performed in all the school productions, and I had a great group of friends. But I was also highly anxious, and severely depressed. When I was 19, I developed anorexia nervosa.

Living in the country meant that I didn't have access to the same services that were available to people in the city. And the services that were available weren't accessible in the way I needed them to be. The local mental health service only offered appointments during school hours, which for me presented a number of problems. It meant that if I wanted to see a psychologist, I had to miss school. I had to somehow explain my absence to my classmates, and I had to tell my parents. As a teenager my number one fear was that someone would find out that I wasn't the happy, confident person I presented myself as.

And so instead I went online. e-mental health services have been invaluable to me. They allowed me to talk to a counsellor from the privacy of my bedroom, in the middle of the night. Nobody had to drive me there, I didn't have to come up with an excuse as to where I'd been, no one had to know. I was the one in control. I could get help when I wanted, where I wanted, and how I wanted.

Talking about mental health isn’t easy. It can be incredibly hard. And when I started to tell my friends about my mental health, I relied on technology and social media to start the conversation. I sent a text, an email or a Facebook message, and said ’hey, this is what is going on for me’. These are some of the most real conversations that I’ve ever had, and yet they never took place in the ‘real world’. In fact for many young people the line between the ‘real world’ and the ‘virtual world’ has become blurred, if it even still exists at all. We no longer see technology, and in particular our mobile phones, as a separate entity, but rather as an extension of ourselves.

We are often bombarded by stories of ‘kids these days’ using too much technology, spending too much time on social media and not enough time in the real world. But who says that the online world isn’t real? It may be different, but that doesn’t make it any less real. And sometimes, like when we need to have a difficult conversation, the online world can allow us to be even more real.

10Carlo’s story – stigma in the mental health workforce

I became very unwell in mid 2008. During this time I approached my GP who prescribed all kinds of medications however he also set up a mental health plan and referred me to my first official psychologist.

I had attended previous psychologists under my employer's Employee Assistance Program, however I was not at my acute stages of my mental health symptoms.

By the time I was referred to my first ever formal psychologist I was experiencing depression, anxiety as well as paranoid psychosis.

I felt stigmatised and not worthy by my first psychologist. I felt judged and shamed for not being able to speak to her – even though I couldn’t. I felt so alone and unsupported.

I felt ridiculed and unworthy of talking about what was going on for me with my second psychologist.

I felt unacknowledged by my third psychologist and ignored as I gave strong indications that I had been thinking about suicide.

Finally, after three attempts of receiving psychological support I gave up. I felt no-one could connect with me. I felt like a second class citizen. I then proceeded to attempt my life on multiple occasions. I felt abandoned and unsupported. I could barely speak, I was petrified and I didn’t feel permitted to share what was happening to me.

My ex-wife and parents who were my main carers were at a loss as to how to further support me. They were reaching out and encouraging me to access the very system that is meant to be able to support people in this situation however the system had failed them also. They were desperate and highly anxious. This impacted on the way they interacted with me.

I attended 2 mental health hospitals, experienced manic behaviours and then received a bipolar diagnosis. Things should not have been allowed to get as bad as they did. All because of the stigmatising way I was spoken to and treated by the very professionals that are meant to be here to help and support us at the difficult times in our lives.

As part of my recovery process I considered taking formal disciplinary and legal action against the alleged negligence and incompetency shown by these registered professionals. I decided that undertaking these steps would have a detrimental impact on my recovery and mental health and decided against it. I would like to see further suicide, trauma and psychosis education across the sector. I did a 2 day workshop last year which gave me the skills as to how to connect with and help someone who presented similar to the way I did. We need better training and an ability to rate and give feedback, similar to Trip Advisor, so that professionals in the system are monitored, educated or removed from practice in the future.

During my 3 year mental health hospital recovery program the staff there found a psychologist using the Australian Psychology Website who ended up being fantastic and I saw for 6 years. However the damage had already been done and painful destruction of my life had taken place by this time.

03 Amy’s* story - culturally appropriate mental health care

I migrated to Australia from China, I undertook an English as a second language course and I used to work for an Australian company and when I lost my job I became unwell. My husband was also made redundant from the same company. Due to getting a redundancy payment I was only entitled to $27 a fortnight from Centrelink and this caused financial issues. I also found it very difficult to report looking for jobs to Centrelink as this was very stressful.

I have been living with depression for 20 years and I was depressed again. I was bullied by my colleagues before I finished my job and had conflict with my friends.

Then I was diagnosed with bi-polar. Since my diagnosis I have been admitted to hospital three times. I was regarded as a patient, and I should listen to them (staff) and everything they tell me, yet I couldn’t understand what they were telling me. The staff seemed reluctant to listen to what I was telling them. I had to write down what I wanted because when I talked to them verbally it seemed there was no response. The dosage of medication they used on me was quite strong; the side effects were very strong. I complained about this, no one listened to me. I had to find out how I could get help. I found a brochure at the clinic for patient rights, I wrote an email to the mental health review board to complain. They organised a day for me to have a review of my case and medication. I provided them with a certificate that explained that the medication was so strong I had trouble walking and I fell down and injured myself heavily. When the review board saw the doctor’s certificate that outlined my fall, they changed my medication.

After I started taking the new medication I was transferred out of the hospital and I went to the Prevention and Recovery Care (PARC) service. I didn’t stay here because it was so hot (summertime and above 40 degrees) and the air-conditioning was not working, but I still went to the daytime activities. During this time PARC made a referral to Partners in Recovery (PIR), I think that PARC told MI Fellowship that there were some Chinese consumers staying at PARC during this time.

I met my Support Facilitator (SF) at PARC. I felt very comfortable with her, because we have the same background; we come from the same country, same city and speak the same language. Because my SF also had a Chinese medical background we had lots of conversations about this, as I was interested.

When my SF found out all of the history and background with me, she pointed out the areas that I needed to work with, my SF helped me to negotiate with my doctor my psychiatrist, and we discussed many life areas.

My SF found out I had the intention that I wanted to set up a small business before I fell ill. Before I became unwell I had enrolled in a program to help me start my own business. My SF discussed options with PIR program manager that due to the amount of Chinese consumers/carers, PIR should hire me to run a class for Tai Chi. I was so excited when my SF told me that I was going to be helped to set up and run a class my mind felt back on track, I started to prepare.

When we started the classes I gave my permission for my SF to talk to the participants separately and organise peer conversation with me to discuss our recovery experiences if that’s what they wanted. My SF used my experience to encourage the others. I think it made a difference and that the participants were more comfortable coming to talk to me about mental health because we were of the same cultural background and peer experience.

In my culture, if your family has someone who has a mental health issue we won’t normally tell anybody, it’s a family secret.

In China if you’re sick you go to hospital, or psychiatric hospital, but services like MI Fellowship we don’t have. From what I heard from my SF is that a lot of consumers they are reluctant to work with her because they did not have the understanding of what the services can offer.

It can take a long time to build up a relationship with a person and their family, we need trust.

We had Chinese outings with other consumers and carers and it was good to have these with only Chinese people as there was an understanding of language, culture, and values. From the Chinese culture if you have mental health issues you are mad and we don’t talk about this openly. It was good to share experiences with others.

I think my experience would have been different without this culturally appropriate SF. I think the major difference, is not just that we have the same background, the importance was SF attitude.

I got a job not only running the Tai Chi class. We expanded my role and I helped to run the MI Fellowship Chinese Project. Getting this job helped make me feel much more confident.

I think my own values of myself, because I am a migrant, I don’t have a lot of education background in Australia, I had just been to the ESL course which I studied for two years. I was very lucky I met SF and her manager they were very understanding. My doctors listen to me now.

I think that because I was able to work with someone who could speak my language, and had a deep understanding of my cultural background, I was able to work more effectively on my recovery, I could express myself, and my needs in a way that was understood properly. We understood each other. Because we could speak the same language and had shared understanding we could be straight to the point and work effectively, however if I did not have this it would have been a much slower pace and aspects of my journey would have been lost through understand and language.

Just because someone speaks the language it does not mean that they can fully understand culture and experience. Working with my SF provided me with the ability to work with someone that understood my culture and this helped build a better relationship.

*Amy – not her real name

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