Finding the right support.
"Simone, this is fucked."
Sitting in my psychiatrists room I stare in disbelief at him as I try to process what he has just said. Of course this is fucked, I'm here aren't I? He is sitting in front of me with my recent hospital discharge paperwork in front of him, reading the most recent report. He looks across at me with a look of desperation and fatigue, questioning how things got so bad. But I am shut off from the conversation now, his words hitting a blank wall between us created by the pain of more lost hope. Isn't this man in front of me supposed to be the person helping my life become less fucked up? If he is doubting me and questioning what to do with me, maybe I really do have no hope.
Trying to re-engage with what he is telling me, I hear him reeling off some sort of statistic that I now fit into, saying I will most likely rely on medications and hospital systems for the rest of my life. He is trying to give me the 'realistic prognosis' speech. But for some reason, after the shock of what he said, instead of listening and submissively agreeing, for some reason I have this new voice fighting back, a bit of fire somewhere deep in my mind.
No. I'm the one that's supposed to be doubting me and giving up. Not him. I'm the one that's scared and feels alone and utterly hopeless, so why does he look exactly like that right now? What do people do when even the person they rely on to provide hope gives up?
The next hour involves me again being admitted to the ward, a routine I know so well I am literally teaching the new nurse how to do it. In the past three weeks I have now been in five different hospitals, had the Crisis and Assessment Team and an ambulance drive me to different emergency departments on two separate occasions and been placed under the Mental Health Care Act. Now, thanks to my amazing parents I have found my way back to my usual psychiatrist and hospital, where I asked for help and support in the first place.
Once admitted, I lie in my bed with an overwhelming sense of dread and fear. This isn't right. I am never going to get better with this doctor, in this hospital. I need to get out, or I will die in the system just like he alluded to. I flip open my computer and start to search. I spend hours on Find a Psychiatrist, searching for ones in my area that treat my conditions and have open books. I put all the parameters in place; Conditions treated, accepting patients, has admitting rights to hospital, good reviews online, close enough location. I am left with four choices, and I list down their names.
The next day when mum visits I tell her my plan. I tell her I have to change psychiatrist again, that I need to go to a new hospital, that we need to start navigating the system I know she hates all over again. Thankfully, she supports me with all the love and energy she can muster at a time I know she is as exhausted with it all as I am.
We try to forget about all the times I was turned away. All the times I got stuck in between with seemingly nowhere to turn. We have been turned away from help because I wasn't sick enough, because I was too sick, because lived the wrong place or because I ran out of eligibility. We have knocked on doors of hope only to be told they couldn't be opened for us for one reason or another. We have spent painful time waiting at home on packed lists; with Mum being the one burdened with having to learn how to care for me and me feeling like I was ruining not only my life but hers and my families too. I prefer being in hospital or in other people's care, because not only do they know more of how to help but also it takes away so much guilt. Home is supposed to be where I am loved and supported, but not where I am put under hospital protocol and my family is subject to all the horrible things this illness makes me do. It's not their fault I am like this as much as it isn't mine.
Still, in order to find the right people and a possible way out of this, we know we have to try again. You do what you have to in times like this, learning from mistakes and just hoping none of them turn out deadly. So mum rings around, helps me get a new referral and we start climbing the ladder, again. Each time we do we are more tired, more discouraged, and more cynical about the whole situation. But each time we also are more knowledgeable, and the new level of desperation for answers and hope drives us on; into the unknown time after time. Because there is always that sentence that comes with the change. Maybe, this time we might find it.
The right kind of help.
Navigating the mental health care system can be one of the most daunting challenges about addressing a loved ones or your own mental health. Put simply, it is a maze, filled with seeming dead ends and obstacles that can leave even the calmest and most logical of people making desperate moves to find answers and direction. While the process can be discouraging and lead to many either not reaching out or stopping at the first road block, one thing I have learned on my journey is that if you keep searching and trying, there are actually many incredible services out there all doing their best to fill the increasing need. The system is by no means perfect, sometimes you luck upon someone who is a great help and services are reached when needed, while at others the lack of services can be entirely detrimental. Unfortunately, it does often come down to money and knowing others who have been there before to get the best help sooner.
It is damn near impossible even to just write out how to navigate the system in a logical way, because it is like a massive tree with many roots branching out that twist and turn around each other. But I will give my experience and give my best shot at providing the most helpful links and services I have found in the hope that maybe it helps even one person on their path.
My experience is with the system in Victoria, so I can't offer much on a wider scale other than the general advice of overall approach and lead you to the amazing country wide organisations. So first of all, for a comprehensive list of Nationwide services and their contact details go to https://mhaustralia.org/need-help .
For the victorian system, there are many entry points. My first entry point was actually through online counselling with Headspace, which is also offered by SANE Australia, ReachOut and Beyond Blue. I also made use of the Butterfly Eating Disorder Helpline. These and the many other phone and online services can be amazing places to start if you feel completely lost, as they can give you help in the moment and direction on where to go next. If in doubt, call whichever number you feel comfortable doing so. The ones I or my loved ones have used are:
- Beyond Blue 1300 22 4636
- Butterfly Foundation Helpline 1800 33 4673
- Kids Helpline 1800 55 1800
- Lifeline 13 11 14
- Suicide Call Back Service 1300 659 467
- Mensline 1300 78 99 78
- Carer Helpline 1300 554 660
For a more comprehensive list go to https://www2.health.vic.gov.au/mental-health/mental-health-services/support-and-intervention/telephone-and-online-services
When it comes to in-person help, a GP that understands both you and the system goes a very, very long way. My GP coordinated all my care, all my referrals, and somehow knew all the right people to get me started. I got lucky there. Search for a GP that gives you confidence you can get to the right services. It all starts with a Mental Health Care Plan, which is done by a GP and takes about 30-45 minutes. This is renewed each year and the GP is able to get you access to subsidised psychologist and alternative health care services such as dieticians. With the current MHCP you get access to 6-10 psychologist visits, which isn't a huge amount but is a start.
When choosing psychologists and psychiatrists, budget will come into play as some will bulk bill while others will have an out of pocket expense above the rebate. To find my team, I used the online search tools at https://www.psychology.org.au/Find-a-Psychologist and https://www.yourhealthinmind.org/find-a-psychiatrist to decide upon practitioners I woud like to try, and then requested a referral to the ones I chose. This is where it can first get extremely discouraging. Psychiatrists often have very full books, with long waiting lists. Both psychologists and psychiatrists alike can also decide whether or not to take you on, so even though you may do all your research and decide one seems right for you, they may deny you. This feels very harsh, and when first searching I think I went through about 5 referrals before finding one. This happened to me again earlier this year as I was told on the second appointment with a new psychologist that I was too complex for them. However, it is a good thing in the end, as it means they aren't practicing out of their scope/level of confidence and you aren't getting slotted into an already overworked professionals roster. Personally I have had three psychiatrists and I've lost count of the number of psychologists.
For those that don't know, the difference between a psychologist and psychiatrist is that a psychiatrist can prescribe medication, organise hospital admissions, and will oversee all other care, while it is usually a psychologist that does the actual psychotherapy (some psychiatrists do both). That is why people will have both, if they can afford it. If you are in the private system, psychiatrists are usually connected to one of the private hospitals in the area and have admitting rights to one or two hospitals. In the public system, the hospital you are admitted to should you need is dictated by catchment area and level of service needed.
There is a huge gap between the private and public system when it comes to mental health. More so than any physical condition. Getting admitted as an inpatient in the public system requires a sufferer to be extremely unwell, and many people are turned away at times of need to be put on very long waiting lists for outpatient services. In the private system, getting admitted can be at many different levels of illness and relies only waiting on a bed to become available in the hospital where your psychiatrist admits, which could be same day.
By far those three, the GP, psychiatrist (if needed) and psychologist are the most important foundational aspects and should be able to lead you towards other available services. It is also important that your caring team talk to each other and work together, which to begin with you may have to help facilitate until lines of connection are in place. Spending the time to create this team, no matter how long that takes or how many practitioners you have to sort through and try, is worth it. Advocate for yourself or your loved one, don't jump ship as soon as it gets hard, it will always be hard, but also don't stay in a line of treatment or with practitioners that you truly don't believe are offering the best help for your situation.
No matter what, I have come to find that although it may not always be the right thing for the moment, there is always something or someone available. I have done art therapy for free through Headspace, had help through the Child and Adolescent Mental Health Service (in some cases you can access this after the age of 18, as I did) as well as the Crisis Assessment and Treatment Team. I have also attended many outpatient programs through both the public and private systems depending on how well I was at the time, as usually if you are more acute the public system is where you will be sent. You can get access to supported residential treatment, social workers and case management workers, carer respite, mother and baby services and many other things.
Educating yourself on what is available and your rights is one of the keys to unlocking access to this support. For a full list of services in Victoria go to https://www2.health.vic.gov.au/mental-health/mental-health-services and for the Victorian Mental Health Care Act (this differs state by state) go to https://www2.health.vic.gov.au/mental-health/practice-and-service-quality/mental-health-act-2014-handbook.
For other states start at https://www1.health.gov.au/internet/main/publishing.nsf/Content/Mental+Health+and+Wellbeing-1.
I know I am writing this as one of the lucky ones. My mum quit her job to become my full time carer, which allowed me to stay out of hospital more than otherwise and gave me a huge amount of help and support in seeking treatment. Really if there was an expert on the mental health care system in our family, it would be mum.
So to summarise, here is a list of 5 top tips Mum gave me that she wished she knew at the start:
- Find a good GP who can help you manage the system and the paperwork
- It is extremely important that you have a treatment team, and that this treatment team talks to each other
- It can take time to find the right people for you. Don't worry about having to make changes along the journey and interview your doctor or psych as much as they interview you.
- Look for as many support organisations around you as possible, they are often hidden gems.
- Don't be discouraged by the people you meet working in the system. Like anywhere some are really good and some should be working elsewhere. It is never your fault!
Now I am taking my care into my hands though and am learning many things along the way. If anyone has questions about particular services or conditions, reach out and ask. It is a somewhat broken system trying to meet overwhelming need, but I have seen people in all sorts of situations get further along their path of recovery regardless. Keep asking, keep learning.
My overall philosophy and approach: When you feel stuck and as if nothing is working or ever going to get better, change something. Sometimes this change may make things better, others it may make it worse, but no matter what if you change something in your treatment plan and approach, your situation has to change.
As long as there is change, there is hope that tomorrow will be better.
Still We Rise.