Rob’s been under private care for about ten years. We shifted from the public to save both our lives and then found out that private psychiatrists weren’t that expensive after all and most do actually have the best interests of their patients at heart contrary to popular myth. Yes, I say again, myth. Sure, we spent a few hundred dollars with our first two private psychiatrists, but what’s a few hundred dollars when you’re fighting for the life of your best friend or loved one. If we’d invested about $500 in private psychiatrists eighteen years ago we would’ve avoided eight years of neglect, abuse, false accusations and close brushes with suicide within the public system. Exaggerating? No.
While toying with the idea of taking Rob out of the public mental health system during the first years of his care - just hide in our home and hope for the best while in limbo - I had an unannounced visit from Rob’s very distraught public mental health social worker. He’d only recently arrived in Darwin ‘to help make a difference’. Well, he was now leaving pronto even if it meant breaking his contract and would deal with the resulting penalties later. My goodness, someone with a conscience, integrity and courage!! He advised us to get out of the system before Rob ended up dead. He’d witnessed avoidable deaths and abuse towards the mentally ill by psychiatrists and other staff in the public system and he no longer could sleep at night. I thanked him as he’d answered my question regarding what the hell I was supposed to do.
While in limbo Rob’s mental illness was starting to take its toll on me emotionally and physically. But still under the impression private psychiatrists were only after money I reluctantly returned again to the public system hoping that perhaps since a few years had passed there may be a new psychiatrist or two on the scene who hadn’t dragged their credentials out of a cereal packet. Without the support of a doctor to confirm that Rob was indeed mentally ill our fine weather friends started to drift away leaving us pretty much high and dry apart from a couple of friends who courageously stood by us. But these reluctantly stood away on my insistence - and for their protection - when Rob and I were lovingly excommunicated from our church to help us recognise our sins. We thankfully had and still have the undying support of my Mum who we’re doubly thankful was not involved with my adopted church and had taken Rob under her wing as though her own child.
To our relief Rob was referred to a sympathetic public psychiatrist, Miss GoodPsych, who didn’t wish to see MRI’s of Rob’s brain damage that I’d come armed with and paid from our own pensions since no public psychiatrist would order an MRI. The x-rays showed Rob to have identical brain structure as someone with diagnosed schizophrenia. But even without this MRI evidence it was no rocket science that someone born with such extensive brain damage should be having issues – of which Rob had many - outside the question of schizophrenia. ‘Of course he’s got problems’, was music to my ears having heard nothing but excuses in the pass to avoid addressing Rob’s daily hell within his head.
I didn’t care if I was wrong about the schizophrenia as long as Rob received the appropriate help. Dr GoodPsych recognised the schizophrenia and that his cerebral palsy was a totally different and unconnected issue. She confirmed for me the information I’d collected earlier in the piece from a couple of the largest organisations focusing on those with cerebral palsy who knew of no cerebral palsy client with schizophrenia, or like symptoms, diagnosed or otherwise. I was sick of professionals passing the blame onto Rob’s cerebral palsy whether they were mental or physical health issues and that he’d just have to live with it. Now there’s the door, close it behind you and don’t come back. **Note that at this time apparently it was a diagnostic loop-hole that someone with brain damage couldn’t be officially diagnosed with a mental illness which was absolutely terrific for those with duel conditions, like Rob, and as a result left without support for themselves or their carers, family and/or friends.
Unfortunately, Dr GoodPsych was short term. She was heavily pregnant and left shortly after first seeing us. She noted in Rob’s records however that due to Rob’s unusual case I should be given an opportunity to speak with doctors and students and share my knowledge and experience. That recommendation mysteriously vanished from Rob’s file. So came along Dr Psych who said Rob didn’t have any form of psychosis only post trauma syndrome, nor was Rob hallucinating in any way, shape or manner. Dr Psych and I had heated debates over this and his definition of a hallucination which he considered only memories of the past or flash backs. Well, Rob had no recollection of gorilla’s from his real pass climbing through windows and attacking him. And what about my face melting off before his very eyes, or the octopus that attacked him while we were at a church meeting.
After many months of debate and being brought to the brink of total burn out trying for six years to keep Rob manageable I insisted Rob be medicated or I was going to leave him in Dr Psych’s care by refusing to take him home. Then he could tell me nothing was wrong through personal experience not opinionated bias. He reluctantly said there was a drug but it probably wouldn’t work. I demanded Rob be given a trial just in case it probably did. A week later we returned to Dr Psych’s office with 90% drop in the level of psychotic symptoms; much to Dr Psych’s amazement and much to ours when he still resisted any recognition that Rob had schizophrenia or hallucinations just a settling of severe flash backs. Go figure.
Two years later we were forced to leave the care of Dr Psych after an unfortunate incident. But Rob still needed medication so I sought a private psychiatrist, Dr Too, who, like Dr GoodPsych, immediately accepted Rob’s hallucinations and other issues for what they really were. Sadly, only months later he informs us that he’s leaving. His hands were bound by law that when his patients went into the public hospital he wasn’t allowed to see them. He could no longer deal with seeing his clients become sick or sicker while under public ‘care’. All he could do was sit back and see them suffer and some ultimately die. He gave us the number of a private psychiatrist. I handed it back when I saw the name. I explained we were known to this now private psychiatrist, Dr Brilliant, and that I considered him brainless and felt pity for anyone having the misfortune of coming under his ‘care’. Dr Too said Dr Brilliant was not brainless and handed me back the paper. Dr Brilliant when Rob had seen him was a public psychiatrist but recently had left to become a private one apparently due to some disagreement within the public arena. Some? Make that more than you can poke a stick at more like.
So shortly after, Rob and I sat face to face with Dr Brilliant. What a change from the past. We listened to an articulate man who might as well have been a total stranger to us. I wondered what hell he must have been through while in the public system trying to hold back all words of wisdom and instead have to spew rubbish and lies to his pass public patients and their families and friends. My derogative past assessment of this man who had now authored one book held no water; he had not fobbed us off, the system had. He was definitely not brainless. And, my goodness, now as a private psychiatrist he not only spoke rationally he was the only one bulk billing at the time and was contactable by phone and email!!
Due to a collapse in my health Rob ended up in hospital for thirteen hellish months. (Read my article: Invalid Medical Enduring Power of Attorney?) We didn’t have to just deal with Miss Social Worker bent on destroying any ties Rob and I had between us but we were again at the mercy of the public mental health system – and Dr. Psych. Once I knew Dr Psych was Rob’s public psychiatrist I knew he didn’t have a hope in hell receiving appropriate treatment. Not that he had much chance with the others either. Thankfully his meds were not changed. Dr Psych knew if there were any changes he’d not get this demon from the pass off his back. But since Dr Psych still refused to recognise Rob’s psychosis we just hoped Rob would survive on his medication, my visits and the quiet support of most of the remarkable nurses that prevent the hospital from falling into total chaos.
Unfortunately with my ill health I was not up to the relentless false accusations spewing from public social workers and hospital doctors regarding my character and intensions toward Rob. At the time I was dying and as far as they were concerned I couldn’t die quick enough so they could relieve themselves of a very large thorn in their collaborative butts. So I decided to step back and not visit Rob for a couple of weeks.
Only ten days later I receive a phone call from the hospital. I was not to worry, Rob was still alive, but he had tried to kill himself and had sustained a small gash to his head after driving his electric wheelchair down a flight of stairs and writing it off. She freely admitted he’d warned the nurse on duty some minutes before hand. I reassured the nurse that it was not the fault of the nurse and I hoped the poor woman was ok. All responsibility rested squarely on Dr Psych’s shoulders but no one would care as he’d plenty of people he could either blame or cover for him. He’d refused on numerous occasions requests from both myself and Rob to write in Rob’s referring notes that Rob was a possible danger to himself and must be watched at all times. The nurses were doing their jobs with the only available information they had. Despite their support on most things the nurses had been lead to believe Rob was only fooling around in order to get attention so best ignore him. Told the nurse I’d be up in a couple hours to assess his situation – it turned out to be a life saving decision – and two hours should be enough time for x-rays and stiches to the small gash on his head.
Rob was wheeled into his room some minutes after Mum and I arrived with his head tightly bound by a blood saturated bandage. The staff were waiting on the arrival of a surgeon to stitch him up. Mum left the room in tears. The surgeon arrived and immediately unleashed his wrath on Rob about taking up his valuable time from the operating theatre to come and see to him and wasting hospital resources. This in turn reinforced Rob’s belief that his life was worthless and he deserved to die. I told the surgeon to send the bill to Dr Psych and the reasons why. Dr Surgeon then reinforced his wrath by taking it out on Rob’s head by sowing him up like a sack of potatoes. Then losing patience over the last five centimetres of gash used a staple gun and missed the mark a couple of times. Rather scary to think after this he was heading back to the operating theatre.
I held back any urge to take the needle and thread out his hands, stitch up his opinionated big mouth, boot him out the room and stitch Rob myself. Instead, a rare moment of diplomacy over came me and I started chatting a little about Rob’s crappy life that had lead him down the stairs in the first place. The surgeon then looked a little embarrassed and calmed down somewhat as I calmly held Rob's scalp together and showed I wasn’t the kind to faint at the sight of blood and guts as I’d in the past shoved Rob’s bowel back after his colostomy prolapsed several times. Ah, common ground.
Small gash!! Rob’s head looked as though he had been attacked by a machete. Collectively forty centimetres worth of gashes that hung exposing his skull and it took ages to bring the bleeding under control.Rob went into shock twice a couple of hours after the surgeon left and I had to alert the staff who hadn’t noticed while I feverously kept him conscious while they hunted down a doctor and my Mum again retreated from the room. This is when we met the first doctor out of three who treated both of us like human beings. As soon as she knew I’d been Rob’s fulltime carer for many years she immediately told me to assess his condition as I’d be the only one able to tell her which of his senses were now affected through the fall and which senses were normal due to his cerebral palsy. He was now like a rag doll where Rob’s always stiff, he’d nearly stopped breathing, he could barely open his eyes and his pupils were dilated.
There’s no doubt in my mind if he’d been left in bed without me there he’d have died that night as no one would’ve noticed the difference between Rob’s normal cerebral palsy response during his sleep from the lapse into shock from the fall. Rob wasn’t pleased I’d helped keep him alive and I wasn’t sure I’d done the right thing as I watched him fighting to breath under his oxygen mask. Perhaps I should’ve just walked quietly away and not alerted staff that Rob had gone into shock. He’d wanted to die since he was seven years of age. No one would have know he was not sleeping but in shock until it was too late. And the way things stood what did Rob have to live for.
Dr Psych still didn’t wish to see Rob. He didn’t wish to be part of Rob’s games. Others from his ‘team’ came to see him. They reassured Rob he’d see regularly a psychiatrist from now on. But once it was obvious Rob wasn’t going to die and had no apparent spinal damage they went back on their word and instead arranged for a counsellor from a church based organisation to come and speak with Rob. The counsellor only saw him a couple of times and said Rob needed a psychiatrist not a counsellor and wondered why she’d been called in. She was ignored and Rob was instead given phone numbers for crisis line and another help line if he felt depressed or in need to speak with anyone.
During the whole thirteen months Rob only saw Dr Psych once; on the day he was admitted to the hospital. And after a couple of his medical team advised Rob to start to learn not to be reliant on others to live his life for him that was the straw that broke the camel’s back. I’d battled for sixteen years trying to convince Rob that he wasn’t a leech on society nor was he using people. I’d pushed Rob on many occasions (sometimes overly) to find out what he could and couldn’t achieve and then these idiots say this! Bloody hell! Rob has no choice but to be totally reliant on people. That’s why he has a 24/7 guilt complex and no self worth. He’s a quadriplegic with mental illness with huge chunks of dead brain tissue from a premature birth and oxygen deprivation that limits his understanding life skills and doesn’t always fully understanding what people tell him. Rob told them he didn’t wish for them to see him again.
This is when I went to see if Dr Brilliant could see Rob outside the hospital if we got a day pass and drove by taxi to his office. Dr Brilliant again stated that by law he was still not allowed to see Rob while Rob was a patient in the public hospital even if he was off hospital grounds. And as Rob had nowhere to live now that I was sick and living in a tent that meant Rob would have to remain in the public hospital with others in similar plight with no access to his private psychiatrist and pretty much defenceless.
And to further sow up Rob’s fate Miss Social Worker arranged for an ‘independent’ assessment by a neuropsychiatrist who apparently concluded Rob had no psychosis, no further brain damage, was only mildly depressed and showed manipulative behaviours. Yes, these guys are good. After years of cover ups they’ve had heaps of practice. This report mysteriously disappeared from Rob’s bedside cabinet before I had a chance to read it. All requests to read it were denied. Rob had to request it. After several requests from Rob we’re still yet to see the slanderous report. A report I feel sure will be read by future doctors and social workers who will take it as gospel and hinder any treatment Rob may need in the future. Yep, sowed us both up real good and left Rob feeling justified over his suicide attempt and opinion of himself as a worthless worm deserving only of death and a total waste of space. And left him increasingly upset he’d failed in his suicide attempt and more upset I’d helped him out of his shock.
After eighteen years I’ve a lot to reflect on and can say without hesitation that the public health system is a Titanic and the private an Ark and that would generally explain why the world is sinking. I grieve for families and friends who’ve unnecessarily lost loved ones or who are fighting at this moment to keep them safe and alive. How close both Rob and I came to being on the list of avoidable deaths. Rob’s and my own pain and torture can only be fused with that of others.
Documented deaths and reports of abuse and neglect submitted to both local and Federal Government fall forever on deaf ears. Nothing is ever done to bring justice for the dead and the maimed living. No accountability asked from the abusers. Nothing, nothing, nothing! Just more cover ups; more doctors of death climbing ladders to prominence out of reach from the hand of the law within a powerful public medical system at war with the private and even within their own circles; a war between those with a conscience and those lacking any visible sign of a shred of humanity.
A supportive and concerned doctor advised me to forget and get on with my life as the medical machine would crush me. But how can we move forward and forget when we still have to wade through lies and slander. When some of us have lost loved ones. Past history makes our future history. And as for me and Rob we’ve nearly been crushed out of existence anyway. So let us raise our head for that one last breath if that’s what’s to be. We’ll not be treated like dogs at the hands of abusive masters left cowering in the corner with our tails between our legs like terrified puppies. People ask why I advocate. I do so not only because I have to but because I want to.
The deep scar from Rob’s preventable suicide attempt.
Thankfully, Rob can’t see his scar daily. Unfortunately it’s still a constant reminder of medical neglect and indifference and a living memorial for those who have died and will continue to needlessly die. A reminder of those who will never be made accountable. I look at Rob's scar and see the many faces that abused him and I over the eighteen years.
Strangers see this scar and naturally conclude Rob must have been in a serious accident leaving him a quadriplegic. Those who hear the story behind the scar generally wish they hadn’t but see the necessity if there's to be any hope in finding a way to protect those we love through our own initiative as the mostly silent politicians aren't going to do anything to change laws nor are they going to even listen.
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