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Taking Charge (1)

Chapter One
A bad day
Taken from the book: Taking Charge: a journey of recovery. Available for purchase (post and download) at http://www.familyconcernpublishing.com.au
I have had an incredibly fortunate life, but sometimes you have a bad day. 
On the Wednesday evening I was teaching Karate to a bunch of 8-12 year olds where I live on Bribie Island in Queensland. I have been doing that for 2 years and love it. Great little group, some with minor problems which we are getting to change over time. But perhaps more of that later.
So we went home, and had supper, went to bed, slept well; all good. Currently on leave to get some writing done, the next morning after breakfast, I was writing an editorial for Advances in Mental Health (the old Australian eJournal for the Advancement of Mental Health which I started 10 years ago). I had pressured myself to a deadline. Like many people, I probably don’t sit properly at a computer, and I was peering at the screen, back forward, head forward, when I got a sharp pain under my right ribs. I had just written “We all experience change...”. I remembered I had been so keen to get at it, that I had not been to the loo that morning, so I went to sort that out, and played Sudoku for 10 minutes (as you do). Finished, I went to stand up, and my right foot nearly gave way. I did not fall, managed to keep my balance and grab something, but then stood and had a moment’s thought.
The problem with being a doctor is that you put two and two together and make five, and sometimes 22. Pain under the ribs may be for instance from gut or from a gallbladder (may be said to be ‘griping’), but of course it may be deeper and include arteries like the Aorta which runs down the inside of your back (where the pain is sometimes said to be ‘shearing’). So the actual description of the pain becomes crucial. Mine was not griping, was sharp, took my breath away, seemed to go round to my back and was about 7 out of 10 (very subjective; we all would perceive it differently). When you put that together with the sudden loss of power and sensation in one limb, it suggests something in your tummy connected to an artery down your leg, or at least an artery supplying the nerves down your leg. My thought was that I had had an Aortic Aneurysm, or perhaps an Aortic Dissection. I yelled over the banisters to my wife “Jan I think I am in deep shit; can you get the car out”, collected PJs, my wash kit and work backpack, and gingerly (and very carefully) went downstairs, and out the back door. Into the wheelchair at the local GP, and up on a couch, my local shook his head: “Not classic, but you are in trouble, and I think we need an ambulance category 2”. What no siren?
All efficiency in green, the ambos were wonderful. Took charge, clear questions, great care, monitors in place for the 30-minute journey, regular checks. Jan followed in the car. Constant questions about pain (7/10 I thought but steady), now specifically round the base of the rib cage to the side and back. Did I need pain relief? Not sweating, sort of managing, I refuse several times, holding my side. Never did like that feeling of being out of control -- even from alcohol really. Heart trace looks good… Pulse rapid at 86 per minute, but no funny rhythm (despite ectopic beats investigated in the past, can’t see one this time). Blood pressure seems a bit high at 180/136 – must be the pain. The pain seems to jump when we go over a pothole in the road, but really not made worse. Young woman green driver is actually taking it carefully; no urgency. I am not dying then.
More efficiency when we arrived. As you will learn as you read on, there are routines that everyone has, and these are both important (because everyone has to transfer information and do the paperwork), but when you are on the receiving end, they cause all sorts of agonies of waiting and uncertainty, and other problems that you have to deal with. And one of my messages for this book is very much “Get over it; take charge where you can; get on with it”.
So we were in a queue of ambulance trolleys, and my details and history were relayed to Emergency receptionists. Twenty minutes; not long in the scheme of things, but an eternity when you are on a trolley in some pain (“Do you need some pain relief. It will be no bother, and you will be so much more comfortable? No thanks, need to stay compus mentis). We can put you somewhere when there is a cubicle free…
A drip needs to be put up of course. Not the nicest thing, but necessary. Luckily Mr. Green Efficiency is superbly trained, competent and experienced. First time into the vein at the antecubital fossa (soft part front of elbow). Bloods taken for various tests; flushed through ready for the future, whatever that may be. We wait. Pain roughly the same, but now definitely curving round the back along the edge between the lower and next right ribs. (“Are you sure that you don’t need some pain relief?). There are developments. Seem to have lost some sensation in the right foot, and there is numbness and tingling down the leg. Jan is by my side; all will be well.
At last a cubicle. Still full dressed in shorts and top, but at least base one. Can’t wait to see a doctor and get it worked out. Bye to green man and partner (“Good luck!” I say, “drive carefully”), off to retrieve other lucky sods. Is it as much of an emergency as I thought? Am I making too much of it? Will I look stupid in the end? What happened? What was I doing – just sitting down and writing an article on the laptop.
Eventually a rather tentative young man appears, looking nervous; and I haven’t really told anyone I am doctor yet. Bare mumbled introduction, a name that I do not catch; no name badge that I can see. Tall, scruffy, jeans, an orange T-shirt no logo, a sort of white coat. Little wisp of black hair sticking up makes him look cute. OK, history of what happened. “I am a fit 65 year old. I was teaching Karate last night to my group on Bribie. Nothing out of the ordinary (do Karate 2-3 times a week, and have done on and off for 20 years… of which more later I suspect). Writing, got up to make coffee, back upstairs, sat, wrote a bit, sudden pain in right upper quadrant of stomach, off to the loo to see if I could relieve it (with no result), stood up, nearly fell over from no sensation or power in the right foot. Frightened I may have an aortic dissection (go for 2+2=22!).
Looks perplexed. No real sense of the logic of history taking. So in medicine we are taught to do things step by step and be thorough, so you begin with the presenting problems and the system that may be troubled (so stomach - because that was where the pain started. And then legs because of the weakness, explore all of that, then move to another system (say respiratory) and then move on to complete all the systems. This is Mister-no-idea. Chest examination by stuffing the stethoscope down the front of my shirt and down along my trachea. So not interested in the actual bellows, just the tube getting there. So what did he hear? Just the noises of air going in and out of my trachea, which is nice and loud, but would have no idea of the transmission of that noise across my lung tissue, and whether air was getting into the small bits of lung at the end of your tubes (alveoli). Same thing at the back; listened all down my spine with the stethoscope under my shirt. Pronounced normal; oh, good. Had no idea about how to listen to a heart either. I mean you have to find it first through feeling the pulse under your finger. Once you have the shape, then you can listen at the tip (the apex), and then work out where the valves are to listen to them as well, and check the blood flow through them. He did take my blood pressure, and felt my pulse (bit only one arm, and not on the lower limbs – eg where part of the problem could have been).
The thing that was worrying was the blank look and the lack of any sense of trying to work out a puzzle – which is what the human body often is. Actually when he listened to the story, he obviously thought I was some sort of loony (and I had not yet told him I am a psychiatrist; that would have damned me). You could see he was asking himself “How can you have two things in different parts of the body?” There is actually a rule of ‘parsimony’ in medicine; you always try to wrap things in one diagnosis if you can rather than having several bits. Doesn’t always work given we are human and are entitled to have a number of things wrong. But good rule to begin with.
Ah well, on to the neurological examination. No logic…totally haphazard... You always have to consider what the nerves do. First they feel (sensation) but then there are several different types to be worked out – touch, pin prick, heat and cold, joint sense, and position in space. They all have different pathways from the skin into the body and then up the spinal chord to the brain, and over the centuries an incredible number of eminent men have carefully tracked each one, so there is a logic and science to it. Then there is power. I had lost power in my foot, so what you can do is to test power by asking the patient to move bits, and then perhaps test further by asking them to press against your hand. Did not check tone either. He did know about coordination, though, asking me to touch his finger, and then back to my nose, which he moved in space after each touch. Very impressive; ah but did he know what he was testing, and was it anything to do with my right foot? Sort of tested reflexes in the lower leg, but did not compare from right (not good) to left (OK). Tested my pupils to light , but did not notice that my right pupil is wider and a bit sluggish after two repaired retinal detachments this year, and the use of atropine to dilate the pupil in that eye.
I was left with the impression he had no idea how to take a history with all the extra questions you need to ask to make sense of a puzzle, but had no skills at examination to help him make sense of the story, or perhaps make a rough guess or three (what we call a differential diagnosis), from which you can work toward a definitive diagnosis and then some intervention or treatment. So we waited to see a proper doctor.
Then an Xray of my chest. I was wheeled out of the blue curtained cubicle on a trolley, and round a couple of corners to be parked for 22 minutes (yes, I checked the easily visible clock). Couldn’t quite make out where I was, but a young man was holding a very stimulating conversation sotto voce with someone who could have been the radiographer. Eventually, somewhat curtly, he (ah, so he was the radiographer; I wonder who she was?) asked me to stand up at the Xray machine and lean into it, keep still, breathe in, hold it and breathe again (only a posterior-anterior (PA) photo, then; no lateral taken, so I guess they are not interested in my right side which hurts like hell. Standing was still a problem, so I was glad to hold onto the machine a bit before I hopped back to the trolley and climbed on. No help; he had disappeared off quickly to develop the picture.
Back to the cubicle briefly. Nice male Philipino nurse assistant did some obs. Then off to get a computerized tomograpahy (CT) for some scans of my head, and then my lumbar spine. Another 20 minutes or so, waiting outside the door, and then more inside while the girl fiddled with some sort of set–up calibration, all the while muttering to herself and then phoning someone to get advice. “OK, I am going to do a scan of your head and lower back”. “Actually, the pain seems to be in my chest, somewhere in the region of T6 to T7 on the right side, so I think the doctor may have got it wrong. Could you please check.” “OK, thanks.” Went straight ahead and scanned my head and lumbar spine – both eventually apparently normal. Why would you listen to the patient?
There was an emerging theme here, which gradually began to dawn on me. I realised that actually no-one had asked my name, no-one had checked an address, no-one had asked me about who I was, what I do for a living. So actually I could begin to assume that no-one cared. I’ll come back to this theme later, but no-one introduced themselves… I know, I was in pain, so you forget details like that don’t you? No. Seriously, apart from the first garbled introduction by ‘mr. cute excuse for a doctor’, not one person had introduced themselves, except (and I correct myself here, the Philipino nurse, and the porter who was chatty while he took me to Xray). No-one asked my name. All the way through there were assumptions based on checking the band around my wrist, presumably details given to the emergency receptionist on my admission by Mr. Green Ambo.
I guess you just assume that ‘mr. cute excuse for a doctor’ had contacted someone and discussed my case. Why would you assume that? Because my first 6 months of work after qualification as a doctor was at a very busy South London Hospital Casualty Department. There were 10 of us there on various shifts, there were always registrars and consultants available to check in with, and we did all the time. A medical degree, however superbly taught, does not make you practically competent; we used to joke about starting to learn medicine the day you qualified. And there is truth in that, because what you build up is loads of everyday experience, put together with words of practice wisdom from others. You add that to all you learned from books, ward rounds, lectures and tutorials, and bit by bit it begins to make some sort of sense. Another bit of the truth is that I actually learned from the nurses; they were practical, well-trained, knowledgeable, had a very active hierarchy, regular discussions of cases, and knew what all the equipment and bandages were called.
So Jan and I looked at one another, and while I as getting worse as far as symptoms are concerned, we just trusted that the system would sort it out. At one point a urine specimen was asked for, so I leaned on Jan’s shoulder, and with an ataxic foot that would not go in the right direction, we found a toilet and she held me up while a peed in the bottle. OK, that bit still worked, but generally on the way back to Cubicle Blue it was clear that I was deteriorating bit by bit. There was increasing numbness down my right leg, and that pain had not gone away. Nothing much else had occurred. I had not vomited, fainted or done anything else dramatic. I was not ill as such, certainly not acutely ill, just increasingly incapacitated. So was I an emergency? I guess we just had to wait for the results of modern science’s little toys to show up their magic. Presumably when all that was complete we would see the consultant.
By this time it was nearly 8 o’clock at night, and we had been there seven hours. Jan and I had had nothing to eat or drink since leaving home at 11.30 am. So we asked where we could get something? No café, and Jan was anxious not to leave me or the building (given she had tried at some stage before and been unable to get back in easily from the car park). Our Philipino man sought permission and got us a cup of tea.
I was definitely antsy. “C’mon Jan, we had thought about bypassing this place and going straight to Brisbane. Its clear this is nasty, but it is not getting worse at much of a rate. Let’s get out of here and you can take me to Royal Brisbane and Women’s Hospital.” “Please let’s just get in the car and go; this is intolerable…” “Let’s wait till the tests results are told us”, gently responded calm if deeply troubled lady. In some odd attempt to rescue the situation, I took one of my professional cards and put it on the growing observation chart; it disappeared (Why didn’t I say something more active? I really don’t know). Silly really. Why didn’t I begin the make a noise? Stamp my one good foot perhaps... Why didn’t I just shout out: “I am a bloody doctor… will somebody please help me to sort this out?” Don’t know really, but there were clearly some sick people around us in the other cubicles, and lots of action. I remembered it well from 40 years before. Let it rest, someone will sort it out.
Some time after the card disappeared, nice smily Philipino man re-appeared and started to take another set of observations. He began to fill in several sets, and said he had been told off for not recording properly. He extended his range a bit, and he used the auroscope to check my pupils, ticking them both as normal. ‘mr. cute excuse for a doctor’ eventually appeared again, did another cursory examination, and began obviously to record it. 
We were told the tests were all normal. At about 10.30pm, we were told I needed a Magnetic Resonance Imaging examination and that the MRI scanner in their hospital was broken, so we would be moved to RBWH. Oh, God what a relief… But then, was that the truth, or was someone saving face? Don’t know. Somewhat after 11.30pm an ambulance was at the door, and about an hour later I was in my second hospital with new competent, efficient and pleasant green emergency people, in another queue to be admitted to the Emergency Department. Of course the staff at RBWH had not been informed I was coming, had no record of a phone call. But we did have a copy of our Xray and Scans with us to prove we had been somewhere. We had spent over 10 hours in a place of considerable incompetence, where no-one introduced themselves, no-one appeared to care, there was no sense of emergency. The thing which troubled me most was that there was no consultant; tantamount to negligence.
Ah well, in my own place of work, perhaps we could find some answers now.
So could I have done better? Well, yes, we could have demanded to go direct to Brisbane, but might have had to fight the Ambulance rules. We could have driven straight there (about 75 minutes), but I was panicked by what had happened, thought I needed to be in a place where an emergency could be handled.
Should I have made the point that I was a doctor more directly? I thought I did. I discussed it frequently with first ambo as he did observations, as he put the drip in, etc. I presented the symptoms to ‘mr. cute excuse for a doctor’, in the way a doctor does. I made it clear that while I knew what I was describing in medical terms, and had a range of possible ideas to suggest, I was frightened by what was going on, and needed someone to take over. What do you have to be or do to get a service? Suppose I am just some ordinary man off the street, with no medical knowledge?
What do I do about such medical negligence? Well, I have decided to write a book about it. I will record every single sad funny wry moment of my illness, and publish it. I will give our local Director General of Health the opportunity to see whatever he wants before I go to press. I do not want to make a formal complaint. It would use up precious hours I do not have. And I am beginning to suspect that my experience is not alone, that as an acute observer of human beings over many years as a psychiatrist, I am seeing something that is endemic, spreading and dangerous in terms of health service care. But I am seeing it for the first time from the inside.
Should I sue over the negligence? No, what would I gain? I don’t want money; Jan and I are reasonably well off. I don’t need to go through courts, and get into some tedious adversarial situation without end. What would I sue about? Could immediate attention have stopped the problem on the Saturday at RBWH (more later)? To be honest I am not sure. Once you start a spinal problem it just seems to go on its own journey to an inevitable end. Would the Dexamethasone steroid I was later to be given have reduced the spinal shock (and therefore the ongoing damaged to nerves and muscles)? Don’t know. But I don’t want hours and hours of legal argument and experts who all disagree and provide 15 opinions for a court to decide over 4 years later. Should I go to the press? No, they will be interested in attacking everyone within sight looking for heads to roll, but they will not be able to find solutions, just score off the drama.
I suppose I should add a postscript. I was sharing the story from my hospital bed with two psychiatrist colleagues the other day, people I have known for many years, and laughing at what had happened (how you do that we have yet to learn in this book). One of them reminded me that for many years she has been a member of the Medical Board in Queensland. She asked if I wanted her to take some action. I backed off rather quickly, realising I might have started an avalanche over something I could not control. No, no. Let me do it my way. “Well I am not sure that I can do that”, she said. “I have an obligation, and if you catch someone like (‘mr. cute excuse for a doctor’) early enough, then remedial work may help him to become a decent caring and competent doctor. Later may be too late”. She may be right. So perhaps the shit may well hit the fan. But that is another whole chapter.

4 comments:

  1. Amazing Graham. Thanks so much for sharing your experiences and I look forward to reading further chapters. I will try reading one per day, as I am quite busy with my little home-based bookkeeping business (I am a qualified accountant).

    I am facing my own health challenges at the age of 55. Without describing what is going on, suffice to say that I have been in my current state of "health" for about 15 months, and after MRIs, blood tests, chest x-rays, etc. there is no diagnosis. I have just visited a second neurologist - he has referred me for another MRI, more blood tests, and this time, a script for Sinemet. I am frightened of modern medicine drugs, I don't trust modern medicine.

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    1. Aina, has everything been sorted now?

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  2. Remarkable Graham. Thank you for your work on a much needed topic. I cannot wait to read your wonderful book and will share it with the Transverse Myelitis Team as well as the Ct. Chapter of the NSCIA. I have many friends here in the United States at the Christopher & Dana Reeve Foundation. Sharing and awareness is key. I know that all the information in your book will help so many people all over the world. I will tell Dr. Dan Gottlieb about your book. All The Best, Donna Carriere

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    1. Thanks Donna. I appreciate your support. :-)

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