How A Path To Follow arrived…
I started writing this blog post in 2017, around the time of navigating mental health services for our 16 year old son and eventually came to realise a couple of things: no amount of journaling is going to provide me the usual relief I get from writing and by the time I finish describing our experience, other potential families will enter this system under supported. So, I postponed procrastinating on my post and just kept volunteering and working; helping those I could, in ways I could. Yep, it’s now 2019 and last week our son turned 18. At times I didn’t think we’d be lucky enough to see that and although it’s been the hardest, most traumatic journey of our lives so far, we are so proud to have walked (often crawled) through this with him; alongside our other two beautiful sons. With his permission, we share this story, in the hope that it helps others; those navigating the service system, those who still live untouched by such experiences, but willing to learn, those who work within the system and the wider community. It is also a tribute to him and our whole family; what we have faced, accepted and battled, as part of this journey, to be where we are today. I have finally realised there will never come a time where our journey will make complete sense or, in some ways, be over. We are a family still in tack; forever different and living separately but surviving and learning to enjoy the precious small moments that come our way.
The mental health challenges our son faced and continues to face, along with the associated trauma and grief experienced by our family, are the determining factors, along with my professional experience in the field, in deciding to turn my volunteer initiative into a small business. Young People, families, community need more; need it differently and if we wait around for the royal commission into mental health report and implementation of those recommendations, thousands of more lives will be lost and more of our community will struggle to live with mental health challenges without appropriate support.
I never, even as a parent who experienced mental health challenges, and as a professional with sound knowledge of the mental health system, could have foreseen the complexity, the gut wrenching pain, the drawn out time and sheer shock and trauma of what we were about experience and as a result, put our child through; vicariously traumatising our whole family unit along the way.
So, what did we learn and why has this resulted in the launch of our peer support mentoring program, championed by lived experience?
Let me describe our Journey and hopefully it will become clear…
The major learnings
That it’s not all bad; let me be up front. Although our journey was horrid and traumatising, there were shining lights in that journey, which enabled us to keep going. Here I talk of the Adult Alfred CATT team we had to consult out of hours & advocated for us from first phone call to eventual admission, the Austin hospital staff and one important member of Monash inpatient unit, who realised keeping our child as an inpatient was going to do more harm than good… We fully recognise and respect that there are good mental health clinicians, all of whom are working under constant funding model restrictions and resourcing pressures, for the good of our community.
Lesson: Like every workplace; there are great staff and not so great staff. Unlike other fields, though, there is ALWAYS additional pressures they all work under due to the very nature of our country’s lack of commitment to mental health.
Our Model: Committed to working with these awesome staff, who cannot, even if they wanted to, provide everything a young person and family need, in terms of support.
Schools are not readily equipped or supported to effectively manage complex mental health challenges and suicide. Our son’s journey really began when he and his fellow students were largely left unsupported after the death by suicides of two of their classmates, within 12 months.
Lesson: Sometimes the education system can still see behaviours related to mental well-being challenges as simply “naughty” and are not given sufficient mental well-being support to effectively guide our students.
Our Model: Committed to advocacy with schools, on behalf of young people and their families.
The youth semi acute system (where patients with more complex challenges are referred) also work under continual pressure and as a result, can fail those in need of their services to prevent them from entering the acute hospital system. We first sought their services close to discovering our son’s experiences of panic attacks, self-harming and voices telling him to hurt himself. On assessment he was deemed not acute enough to become a client of their service. He was justifiably scared, lied and/or minimised his symptoms, alone in a room with professional strangers. Even after we explained that we thought he was lying it was recommended we seek private psychology.
Lesson: The threshold to enter our acute (hospital) and sub-acute (CYMHS) has increased dramatically; to the point that you either need to be immediately deemed you will hurt yourself.
Our Model: Not catchment bound, nor bound by any funding model that determines who we support, how long we support for and how that support looks. Flexible and customised.
We did seek private psychological service. It seemed to work for a while, or did it? Turned out that our son went on hiding and minimising his symptoms, again justifiably in our current society, until he could no longer. Upon disclosing his voices; he was immediately deemed too complex for the current service and psychiatric intervention was recommended. There was no risk assessment completed; he couldn’t tell me who our son’s voices were telling him to hurt…only that they were. I had to find that out, in the car, on leaving his private consulting suite forever…
Do not pass home, do not return to the family environment as it was ever again. Proceed directly to hospital. That is what was recommended by two trusted colleagues in the field, upon telling them of our son’s risk assessment. They were right. The services we received, unfortunately, were largely not…
Lesson: Shop around; get recommendations. Know up front what the service will get you and for how long. If you are not happy, request private consultation with the practitioner.
Our Model: Fully trained and experienced in assessing and managing risk.
In line for triage, another boy, approximately our son’s age, was taken before us because his distress was obviously visible to the nursing staff. Our boy, on the other hand, looked tired, unwell sure, but inside himself; very much like all other people waiting… to us we knew he looked totally like the boy who was well practised at hiding his symptoms for some time, certainly not obviously and visibly distressed to those employed to care for him.
Our son was not psychotic, but he definitely was experiencing auditory hallucinations instructing him to kill himself and his loved ones. His logical part of his mind, slowly becoming beyond exhausted, was still holding these voices in, still keeping them invisible to the rest of the world. We, his parents, his advocates, encouraged him to finally tell someone at ED… Boy I wish he had received a different reaction to the one he did…
Lesson: Emergency departments are not set up to consistently and professionally triage mental health presentations, in the way they are physical health conditions.
On entering the ED room, the CATT member introduced himself and said “let me tell you something mate. You’re not psychotic, you’re not hearing voices and you need to decide if you want to get yourself out of this…” He sent us away with sleeping medication and a referral; yep back to CYMHS, the place who said they would contact us to ensure we had him set up with private services; they did not. We were instructed to call CYMHS if they hadn’t called us by the following Tuesday (we presented on a Thursday night). We walked out that hospital, to the carpark and our son, expressed that his fears of no-one believing him, as confirmed. How many kicks in the guts can you get before you stop trusting; stop talking and find your own ways to treat yourself?
With our son still distressed, symptoms and risk not reframed, I proactively phoned CYMHS the next day. I was told that no one allocated to our catchment that day and would have to wait until next week… We had a whole weekend to get through, with a boy who was highly distressed with active suicidal thoughts.
Lesson: Severe/Acute anxiety can present with auditory hallucinations and visual delusions, the symptoms of which might be the last to subside and first to return in times of stress. Read: Not necessarily PSYCHOSIS, but still very worthy of immediate support.
Our Model: Experienced in working with partners in the field and willing to work alongside any more specific support required and advocate on behalf of young person and family.
Our shining light, one of the people recommending taking him to hospital, was the Adult Alfred CATT. Desperate for assistance, I phoned them again, when our son went missing, to find his way of dealing with the pain; away from his loved ones, who were, at that stage, not letting him out of our sight…
By Saturday night they had sent two young, awesome male Social Workers out, to assess our son, again. Our awesome son in return, who could have hidden his symptoms again, was brave enough to share them. Their recommendation was that he needed to be in hospital; yep that very same hospital who had sent us home, without any assessment at all. At least this time, we avoided the waiting area fiasco, with a phonecall from the social workers, confirming our son’s presentation. Take the small wins people…
Lesson: Our services are catchment bound; our area has no youth crisis team, thus our use of the Adult team and no hospital settings at all for young people aged under 18 years.
As luck would have it, we received a welcome from the very same clinician who saw us the first time with a “you’re back again”. 24 hours in emergency, next to a young girl who had overdosed, was distressed and looking for love; where received none. Finally, our son asked for medication; I wanted some too.
I asked:
“Can we use our private health to transfer him?”
“No, they cannot cater for him, he’s too severe”.
“What if we set up a roster of family and friends and have the CATT visit?”
“If you try and take him now, we will need to use the legislation and make him involuntary”.
I cried some more…
Lesson: The acute and semi-acute system’s processes are rigid and can rob parents/carers of any advocacy power.
Our Model: Aware and inclusive of impacts on parents and other family members and as such, supporting them is integral to our model of care.
The Austin inpatient unit staff and volunteers were awesome. Our son was supported; from arrival with the security frisking and confiscation of items, to the overwhelming grief of being separated from his family who deserted him in this place. All I hear, still to this day, through sobs of absolute grief and fear, “Please Mum. Don’t leave me here. I just want to come home.” I couldn’t talk, but my husband did and was able to soothe him.
Within 3 days he was assessed, started medication, groups & school. Then on the afternoon of day 3, it all fell apart… He was to be transferred back to Monash as a bed had become available. We were back to the start; actually, perhaps worse than the start; more trust eroded.
Lesson: The acute (and semi-acute system for that matter) is locality/catchment based and those working within it have little to no power to negotiate within this system.
Our Model: Sound knowledge of the mental health service system and able to navigate with families to get services that are best fit.
Imagine, if you can, a scene from One Flew Over the Cuckoo’s Nest? That is what it felt like we were taking him into when we took him to Stepping Stones. All I could see was an old nursing home, that was dark, cold. A nurse’s station, with two doors, accompanied by two small windows, with sad young faces looking out. A wave of the security brush and into a shared room. I cried again; I knew I had to leave him there; he didn’t cry this time…
Fortunately, yep there’s that appreciate the small win again, the small team allocated to our son’s care determined it would be worse for his recovery to stay among those, so unwell at this unit. They discharged him the next day; on home visits and another referral to… Yep, CYMHS.
At this stage, we thought the worst was probably over; we had him home, he was much more stable and medication was starting to assist. We were wrong.
The next stage of our journey will be shared in part 2.