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Sunday, December 26, 2010

Haiku on Joy

Joy comes from being
Surrounded by family
And jokes a million
Taking Charge
I really think it is time for medicine to reassess the way it views so-called ‘alternative’ therapy, begins to believe some of the excellent research which now abounds for various therapies not formally part of western medicine, and acknowledges that many thousands of years of alternative practice cannot be wrong. Surely, like everything else in life we should attempt to use the best of what works (perhaps in combination); perhaps, more importantly what works for you. The solution is always more important than a slavish following of single traditions, albeit that we have to acknowledge the basic dictum of all care – ‘first do no harm’ (primum non nocere).
The bony spine provides a box around the spinal cord (all the nerve tracts up and down to the brain which need to be protected). The problem is that ‘the box’ is not totally rigid. Within certain limits it is flexible, and allows us to bend down or squat down (forward and backward flexibility) and tie a shoelace, or twist so that we can reach behind us when sitting down (rotational movement). It allows us to use our left hand to reach round and scratch an itch on the skin of our right shoulder blade, or allows us to bend sideways while sitting down and reach sideways to get a book off a shelf. All of this is controlled by an intricate set of muscles which work together to both move and protect the spine. In very general terms our neck bones (cervical spine) allows us to rotate, twist, and bend/straighten our head. The chest spinal bones (thoracic spine) are a bit more limited to bending and straightening fore and aft, and the lower back (lumbar spine) allows us to twist but has little fore and aft bending movement. Of course the whole thing works as a unit - all contributing to any one movement.
I was watching my grandchildren open their presents on Christmas Day. They had been waiting some time (or at least they thought they had), and all they wanted to do was get at what was under the tree. So within minutes, with little formality, each of us had a rough pile sitting next to us. Well that was true for the adults; the children had struggled to create a pile mainly because they wanted to open things as they went. They were not interested in the labelling, are unlikely to ever know who sent what and, to tell you the truth, are even less likely to write and thank the gift givers (“It wasn’t like that in my day…”), it is up to the parents to do that. So when the 5 year old started to open his gifts he totally ignored the fine wrapping that had taken someone hours to do; it all came off in seconds. The box in which something was protected was also ripped open; no cautious appraisal of any instructions or warnings, no search to find out what the contents might be about. Only the contents were of any interest, and he just knew he could work it out from there, which was correct about 50% of the time.
But in the medical profession we are not impulsive children. I was always taught that after you had taken the history, you had to look first - before you touch. So actually you can tell so much about a person’s medical history just from watching them walk into you room, before you ever meet and greet. A modern day exponent of this would be the lead character in the TV series ‘Bones’. Tempe Brennan, forensic anthropologist, gets furious with anyone who disturbs the original scene. Immediately she arrives she begins to describe very carefully what she sees, and the possible implications. (All right, she has been scripted to draw all sorts of conclusions that the rest of us could not imagine in a months of Sundays). This set of observations often becomes a very important part of the whole story.
There are real life stories that tell you why you should observe carefully in this way. An outrageous example from my own experience goes back to my first job as a doctor, aged 23, in an Emergency Department in South London. We had some extraordinary cases brought in by ambulance. The one that comes to mind is when I was called out to certify someone as dead in the ambulance (a ‘Dead on Arrival’ or DOA). I climbed into the ambulance, and found a slight male of about 40 years or so. He was lying on his back, very dead; the pooling of blood under his skin suggested he had been dead some time. So I asked the ambos whether they had any idea why he might be dead. “No idea, mate. He was lying on the floor like this when we found him.” There appeared to be some blood on the clothes at his back, so I asked if they had turned him over? “Nah, mate, we just picked him up and put him on the stretcher.” I asked them to turn the body over and there, protruding from the back, was the knife that might have caused the problem. We called the police. (I guess this could not happen today given the training our paramedics all receive, but in the 60s...).
So I am bemused by my recent experiences with doctors and my spine. They all seem to have rushed through the history, often cutting me short on what I thought may have been an important detail. So in my case, the description of the 24 hours leading up to my problem always seemed to be a bit boring for them; you could see the eyes beginning to glaze over. Basically they dismissed most of my story of stress as of no consequence. Given my past history with my spine (detailed below) I have always thought the story is much more important than they gave credit for (Well we probably all feel that…).
In essence I had a series of rather lengthy documents to write under time pressure (I won’t bore you with the details) – one by the 19th November, a second much more lengthy by the 20th November (and incorporating the first), and then a third lengthy and rather complex document by the 30th November. At the time of the onset of the problem (3rd December), I was writing an editorial – again under time pressure. But there was an added complexity to all this writing. 2009 really was not my year medically, and in March and again in July I had had operations for detached retina in my right eye. This had all been resolved, but I was awaiting new glasses to correct for all the damage. Essentially I could only really see well out of my left eye, so my writing position was really a bit odd. I was leaning forward more than usual, perhaps favouring my left side, and then craning my neck a bit more to actually see the print that was already at 14 pt and 200% - ie large. I was peering with my left eye, which means that I was probably twisting a bit to the right. I believe that overall I was twisting my spine, not just for short periods of time, but for hours on end in a writing day of 9-10 hours, and over a couple of months. Let’s leave to one side why you would be bothered to do such a thing (in simple terms, I am passionate about what I do in life (aka ‘an idiot’)).
Now we have to go back into my past history a bit just to make some sense of this, or at least to provide a context for my beliefs about my spine. Back in the 80s I was in private practice for about 4 years. I had great rooms, a superb secretary, and a very comfortable consulting chair, and was enjoying what I was doing (and keen to pay off the rooms). So bit by bit, the day extended. I saw children, or adults, or families on the hour (for 50 minutes) every hour. Eventually I was doing 13 hours a day, tiring but fascinating and satisfying, even if I had only limited time with my own kids when I got home. (OK you may be beginning to see a pattern here – someone who has always been fascinated by people, never shirked hard work, and was always willing to work long hours (OK, ‘an idiot’)).
So, I developed Sciatica down my right leg. That is, by sitting all those hours during the day, I was obviously putting pressure on a set of muscles, or twisting my lumbar spine; either or both was putting pressure on the Sciatic Nerve (basically a bunch of nerves which come out of the spinal cord, and go down the back of the leg). The result is pain, gnawing pain that is not easy to reduce by changing your position in the chair, and seems to get worse day by day. Eventually I had to do something about it, and was advised to see a chiropractor. He heard my story, looked at my spine (note!), felt all the way down the affected area, and then massaged various muscle groups (which was not pleasant; I had not known that those particular muscles down my spine and in my buttocks could be so sore - particularly one little tiny muscle called Piriformis). He put some foam wedges under my hips, and put pressure on my spine. The result was very good; within a couple of sessions I was in little pain, and a series of follow-up sessions left me confidant that the pain would not return. Then came the crunch: “Listen, Graham, you’re an idiot (this particular gentleman would have never said ‘bloody idiot’, but I heard it as such). You can’t treat your body like that, sitting in one position for hour after hour, day after day. Be kind to yourself; get up and go for a walk around the block several times a day. If you can’t do that then use one of your precious sessions (yeah, I know it will cost you), and get up and go for a longer walk, or go to a gym.” I did, and essentially have had no further trouble with my lumbar spine (there is a longer story here, but it would only embarrass me more, and we need to get back to this chapter).
Some years later, I was back in the public system, and clinical director for a service, which carries certain responsibilities and pressures. Over time I began to get rather frequent migraine headaches that would lay me low for a day or so, and lead to the consumption of rather a lot of paracetamol. Well, Jan had had some similar if more severe problems with migraines (probably in some ways from the pressures of living with me, and the responsibility for family life in the partial or relative absence of a father and husband), and had gone to see our favourite chiropractor. He had been very helpful. So along I trotted again. He listened to my story, looked at my stance, gently looked at my neck (note!), gave several muscle groups some serious massage (again surprisingly painful), and then took hold of my head, loosened up the neck a bit, and then jerked sharply to one side (a sharp click). A bit more rapid massage, and … no more headaches! Again several more sessions led to a good result and then (you guessed it): “Listen, you’re an idiot. You’ve stopped exercising, you are putting yourself under stress again”. We then explored a range of issues – like the height of my desktop computer screen, whether I had recently had my eyes tested, and the comfort of my desk chair. Mostly, the story was that I had once again started to be in a fixed position for some hours a day (did a lot of sitting in meetings), and had stopped giving myself the opportunity to free up my body with exercise. Of note I had also stopped meditating, a practice we had started as a family some years before. So we made some corrections, I continued to have preventive chiropractic sessions for some months, and… problem solved. Overall, given my practice of regular Karate over the last 20 years, my now ongoing meditation, and some other changes in my lifestyle, I have never had Sciatica again, and only very rarely get a migraine like headache. All of that then is a long-winded way to bring us back to the current problem.
So here I am with a problem in my thoracic spine – admittedly, according to all the tests, it is the spinal cord (the soft bit inside the box) that has been damaged, and has caused all the neurological symptoms. But since I have had this current problem, only one person has ever fully examined my thoracic spine (more of that later), and they are not part of the medical team that looked after me for the first 5 weeks after onset. I tried several times to interest people in the ‘box’ around my spinal cord (“Do you think it could be something wrong with the bones of my spine?”) – nothing. Nobody on the medical team seemed to think the idea might be plausible, nobody looked to see if my spine was straight or twisted, nobody checked to see which muscle groups were sore, nobody looked to see if anything was out of place. The bit that is really weird is that they allowed, nay expected, me to lift myself up, attempt to roll over, use the monkey bar attached above the bed. Nobody seemed perturbed; there were no prohibitions or restrictions on what I could or should do with my thoracic spine.
I have to admit I am glad they did not try to cotton wool me; I can imagine that if they had wanted me to keep my spine absolutely still during the period of investigation, I would have gone nuts (not a good thing in a psychiatrist)! But supposing this was something self-induced yet again, supposing I had done something to my spine that was the cause of the whole problem? Supposing that the stress of the day before and then my teaching an enthusiastic Karate lesson had set something up (some twisting or bending) which had then set into position while I was writing my editorial. My constant (eye-glazing) question has been “What should I not do again, so that I don’t get this happening again?” To which thus far there is no answer except “Don’t know” (which to my mind seems also to suggest they consider my thinking awry).
They did examine my lumbar spine on the several occasions they attempted lumbar punctures, but never strayed into the territory of the thoracic spine, except to note the difference between thoracic and lumbar to define where L1 was so they could count down to the space between L3 and L4 to put the needle in. Of course, along the way, there have been many Xrays, CT scans and MRI scans which must have shown the spine in glorious detail, and I am sure someone must have considered and reported on the spine itself. But, to this day, I don’t know whether anyone examined the bony bits, and certainly no-one on the medical team commented on reports on the spine itself and, if they did, no-one has ever discussed it with me.
If I had to describe the feeling in my legs in broad terms it would be that it is like when you have put pressure on a surface nerve for a while; you get this feeling of numbness, tingling, and the muscles don’t work as they should. I am sure you would have found yourself leaning at some time on your elbows, engrossed in a book, or watching the television, and when you move you realise something has been pressing on what is known as your ‘funny bone’. In fact when you get the sensation from being hit on the funny bone it is because the ulnar nerve travels over the surface of the bones at the elbow, and is easily accessible. Pressing or hitting it temporarily stops the flow of energy up and down the nerve, and your little finger ‘goes to sleep’, feels numb, tingles, and doesn’t work. After the hit, or when you stop leaning on it, the flow in the nerve gets going again, the feeling comes back, and you are not sure whether to laugh or cry.
So, I had been holding on to this idea that there was something pressing in a similar way on a part of my spinal cord causing first the loss of sensation, followed by the return of tingling, and some recovery of bits of movement.
This was confirmed in part by my acupuncturist who one evening while sticking needles in my back said: “You look like you have a subluxation at about T6. On the left there is a bit of a bump, and on the right there is a hollow.” I can’t really prove my theory that this external problem in ‘the box’ may have caused the internal problem in my spinal cord. But then all the expensive tests I have had have not been able to prove that I had an embolus from somewhere that got stuck in an artery supplying the spinal cord at just that point, or perhaps have some sort of inflammatory transverse myelitis.
Along with my own causal hypothesis goes the thought that if whatever is pressuring the cord could be relieved, then over time I might get more recovery. Dangerous thought. This is not to avoid the fact that ongoing physiotherapy is going to provide the basic building blocks of improvement for both my sensory nerves, as well as those supplying muscles and movement. But my life’s experience told me I should go to see a chiropractor or an osteopath. Luckily despite moving from South Australia to Queensland several years ago, through family connections we had a number of excellent options; people in whom we had some trust because of their qualifications, their experience, or our experience of them with other issues.
Now, do you tell the medical team, or not? We had certainly explored the use of acupuncture with both the doctors at RBWH and at the PAH Spinal Unit. But having discussed this over 3-4 weeks, I decided this one was our business, would cause serious ructions (which I did not need – I had been through enough battles), and might even lead to an unnecessary forced choice. I guess we realised that there was a very real risk involved given occasional media reports of catastrophes following chiropractic. Well we discussed all that backwards and forwards, and concluded we were prepared to take the risk. Call me arrogant or stupid, but I was willing to take the risk.
There was no way we could make arrangements while I was in the Royal Brisbane, the logistics were too hard. But on a Monday afternoon I arrived on the Spinal Injury Unit by ambulance. On Tuesday at lunchtime Jan and I sneaked off ostensibly to go to lunch. Now I say ‘sneaked off’. In fact we went with permission from the staff. I could do the transfer from wheelie to car. We put some plastic on the seat to help me slide across (but really in case of accidents). At the other end, about 2 kilometres down the road, we reversed the process, and I went for my first chiropractic treatment.
Actually he is a qualified and experienced osteopath. He listened to the lengthy story, was interested in the results of investigations to date, and then took further interest in my chiropractic history – essentially my rationale for being there. Then, having been asked if I was happy for him to touch me, I was lying on my tummy with my back being explored carefully (looked at!). There was confirmation of a possible subluxation (a bone slightly out of place) at the T6 level. All the little points of soreness around what seemed to be the original ‘injury’ site were noted, as were a number of possible problems (including dear old painful Piriformis again) further down the back into the lumbar and sacral spine areas. Some of the sore spots were massaged. Then I was turned over, and my tummy explored including a really sore spot on my right Psoas muscle (that lines the inside of the back and has some control over posture). Finally we reached crunch time (literally), and I sat up (somewhat wobbly) with crossed arms (and my fingers), and was hugged in a particular manner that created several clicks (a small crunching sound) in my back.
With bated breath I waited… These things can go wrong… Those press reports… Doctors take great delight in telling you about the cases that went wrong… I am sure that, as with every physical procedure there are phenomenal risks. So, bated breath… and… and nothing. Just felt OK, but not substantially improved. No magic sudden surge in feeling. OK we are told that any results may be over a couple of days. Any adverse effects? No. Am I grateful? Very. My past history should tell me that there will be no problems, but you still wonder.
Then I began daily physiotherapy in the Spinal Unit every afternoon (more of that in a later chapter). Wednesday evening I had one of my ongoing acupuncture sessions on my bed, behind closed curtains (with full written permission from the hospital). So by Thursday (my 3rd physio session, and my 4th day on the unit) I was standing much more confidently, walking unaided with the parallel bars (the death grip replaced by light touch when needed). The physio obviously thought I could do more, so he tried me on the rollator - a walking frame with wheels. When this seemed to work well, he tried me with elbow crutches, with which I was OK but not too confident. On Friday I was trained on a walking frame with no wheels (not the crutches), and also taught how to get up off the floor if I fell. Amazing progress; each step of progress just makes you weep. After this session I was given a weekend pass to go home – to practice on the frame, as well as practicing a whole list of exercises for specific muscle groups, especially my hip abductors.
So my observing and sometimes scientific mind asks: “What is making the difference? To be more precise, which single treatment is helping me to improve so rapidly?” To which the answer is a combination of things. “No, no, no!” goes my left brain “which single treatment?” To which the answer is I don’t know, and I don’t care! It is actually a whole heap of things. It may be the type of original problem, and the fact it never totally traversed the spinal level; it could be the fact that I have been a very fit person for my age, eat well, and exercise regularly; it could be that I have a good reservoir of strength (particularly core strength); it could be the rest I had in hospital for the first 4 weeks; it could be the Dexamethasone I had during the first 3 weeks; it could be the quality of the physiotherapy I had in the early sessions at RBWH which gave me such confidence; it could be my essential spirit to overcome adversity (also called by some ‘pigheadedness’); it could be all the little exercises I did in the early weeks to find out what still worked.
However, I believe that acupuncture has played an enormous role in my improvement, with the regular sessions since the very beginning of my problem. I believe the chiropractic session did indeed make a difference within a few days, it sort of ‘freed me up’; I cannot describe it any other way. I think the careful specificity of exercises from the physios played a major role in helping me regain strengths that I had lost. At the end of the day it is no one thing that has made a difference – it is a whole combination of things over time. But I can say with utter confidence that without the acupuncture I would be nowhere near where I am at this time of writing. I can also say that I looked forward to my second and subsequent chiropractic treatments with nowhere near the anxiety I felt about the first session. I believe it freed me up further to be ready for the further gains I expected from acupuncture and physiotherapy.
So am I in a position to advise you on your medical journey? Of course not. Only to say that as with all the chapters in this book, I urge you to take charge as much as you possibly can. Contribute what you can to the discussion about your own care. You may not have medical knowledge; you may not know how to diagnose your problem or what therapies are available for your condition. But you do know your own body. You do know what is likely to help you because it sounds right or feels right, or because it has helped in the past. Conversely you know what is likely not to be helpful, because you tried it before, or because everything you have read on the Internet frightens you, and no-one has been able to reassure you enough. If you believe in an alternative therapy, then discuss it with the medical team. Listen to what they have to say. If you need to get some other advice, then get it. The most successful approach is for you to be in the best possible partnership with your treating team, but this is a two-way street, and needs for them to have some respect for what you might know about your own body, from past experience of living in it for many years. Don’t alienate professionals, but equally don’t be frightened of seeking alternative medical care to work alongside ‘Western’ medical care.
Ultimately, make up your own mind, or discuss the whole thing with your family and decide on things together. Take charge as far as you can.

Sunday, December 19, 2010

A Haiku on Time

The present slips by
Each moment of choice a step
To unknown futures
Taking Charge
Big Bums
This chapter may be provocative and get me into all sorts of trouble (as if the rest of this book won’t!). But when you are lying in bed paralysed you have time to think seriously about things you may have noticed, laughed about and dismissed, when in fact there are serious implications.
I have always thought that as a health practitioner I should be authentic. That is I believe I should practice what I preach. When I was first a doctor, I made the mistake of continuing to smoke cigarettes – for a total of 10 years, roughly from aged 21 to aged 31, although like many young people I practiced at smoking on and off from about the age of 13. I smoked French cigarettes, untipped Camels and small cigars, although ultimately I settled for Benson and Hedges tipped cigarettes.
I had been brought up in a family where my mother was a heavy smoker, as were other relatives during my childhood and youth, and while many of my friends and colleagues did not smoke, many did. The ‘mistake’ was in fact a composite of bits of denial. First was that during my training in medicine, the evidence was mounting that there was a direct relationship between smoking and cancer of various sorts; eventually it became irrefutable, but for many years I dismissed it, despite the early public awareness campaigns. Second was that my mother died from aggressive lung cancer at the age of 50 when I was 26 and had just entered general practice; I cannot believe that I went on to smoke for another 5 years when the personal family evidence was so strong. Third, I cannot believe that I smoked when I had three young children; I pray that there is no long-term consequence. Fourth, I cannot believe that my wife put up with kisses for all those years that must have tasted like an ashtray. She came from a family of non-smokers, and while she had practiced smoking alongside me during our teenage years, she made the right decision and stopped. Finally, coming back to the substance of this chapter, I cannot believe that I smoked in my general practice surgery, while I was giving advice to my patients with a variety of cigarette related medical problems. So I am a ‘reformed inauthentic’ – probably the worst kind of authentic.
For the first time, I have been a patient looking at the system from the inside. And I worry that as a health system we are inauthentic; I see it all around me. We have unhealthy people working in an unhealthy system, preaching about health to patients, who must so often laugh behind our backs.
Just as an introduction to this topic of big bums, I offer a little story. Several years ago, a younger colleague and I used to fly from Adelaide to Mount Gambier by small plane once a month to do clinics in Child and Family Psychiatry. I remember on one occasion having been escorted to the Navajo Chieftain 9-seater by a very very large man in his 40s. He was wearing the livery of the company who coordinated the flights, but it never crossed my mind that he might be the pilot. Anyway, we were all strapped in, and this guy climbed in through the rear door (which would have been a feat in itself, given my memory suggests he must have well exceeded 120 Kgs). The rear door is the only access point to the plane, and as he worked his way to the front, we all had to lean away from the central aisle, because he overflowed on both sides. As he got to the pivot point, the plane suddenly tipped forward (thankfully onto the front wheel) to a chorus of sharp intakes of breath. He literally had to manoeuvre himself into the pilot’s seat with much huffing and puffing, and must have been uncomfortable in the extreme. I was surprised he could find the joystick. Anyway, obviously we all survived, but I can remember the mounting anxiety as we took off, when normally I would be quite sanguine about flying. With all that weight up the front, surely we would never get the lift needed to take off. Of course we did, but I swear I could hear the engines straining.
I have had several conversations about this story with pilots since, and my understanding is that there are strict rules about health and fitness. When you are in a situation of control over many lives, you have to be very fit and with low risk for a range of medical emergencies. Airlines go out of their way to ensure that their pilots only work certain hours at a time, have rest and recreation in between tours of flying, and maintain their fitness to fairly stringent standards.
Why does the health system not do the same?
I remember one day walking out of the Mental Health Centre onto the main hospital connecting corridor shortly after I first arrived in Brisbane, to be met by this vision of three ginormous women in nurses’ uniform walking ahead of me. They seemed to be similar in height and width, were walking three abreast and deep in conversation as they ambled along with large black-trousered buttocks swinging from side to side in unison – left, right, left. They seemed deeply unconcerned that they were literally taking up the whole corridor, and that several people had attempted to bypass them, faltering at the last minute – perhaps out of politeness, perhaps in fear of being squashed. In a hurry, I did eventually manage to squeeze past, hugging the wall, pretending not to notice them, legs forcing the pace (could not do that at the moment!). They obviously took no notice of me, not a second glance, lesser mortal that I am.
Over the next couple of years, these visions of large women seemed to become more and more frequent, everywhere I looked. Eventually, I came to the somewhat quirky conclusion that all enormous women in hospitals (whatever they were wearing) were nurses until proved otherwise. I would comment to colleagues “Must be a nurse”, and they would look at me strangely (probably wanting to ask: “How long have you had these funny ideas, Graham?”). Then I began to notice something else. You could see, under all the rolls of fat, that many of these women were (or had been) quite beautiful. Seriously, if you took the time to look, you could see the effervescent laughing child these very obese people had once been. In fact (being someone who plays with words) I coined an acronym OWB (once was beautiful) From time to time I mutter this to the consternation of colleagues, and deep frowns from my wife who disapproves of such criticism.
Of course being a psychiatrist, I began to wonder why so many women wanted to cover up. Did it just happen; is it the result of patients leaving vast boxes of chocolates and other goodies in gratitude for the quality of care they had received? Was it the long hours on the night duty roster, with all the patients tucked up in their beds, and nothing else to do but eat? Or was it deeper than that? Some dark need to avoid looking beautiful and cease the fawning of all those annoying male medical students?
I began to notice several other things. First, they rarely seemed to be happy. They were all so serious, sometimes even downright miserable. Never the jolly fat ladies of stories of my youth; just ‘grumps’, unhappy with their lot. The second thing was that the further up the nursing hierarchy you looked, the more likely nurses were to be obese, not necessarily like the three ginormous nurses I had had to squeeze past in the corridor, but certainly overweight. I was delighted some months ago to see in the newspapers that the new President of the Australian Council of Trade Unions was a nurse, and a very fit-looking one too! The previous president had also been a nurse, but had been in my ‘ginormous’ category, often shown by media struggling to move thunder thighs along some pathway or corridor to an important meeting. What sort of example does it set? Another example of a senior nurse in my ginormous category, frequently on television, is a nurse cum whistleblower in a high profile legal case against a surgeon, followed excitedly by the press. She, too, was also shown to be struggling down corridors. I wondered whether these two very senior ladies had set a trend, sort of ‘follow-my-leader’. Perhaps there is this deeply ingrained belief that to be very important or to become very senior in the nursing profession, you have to be large. Bigness seems to have become equated with importance.
I am being cruel, and the vast majority of nurses are nowhere near obese, especially those who come from Asia or the Indian subcontinent. There are also some stunning exceptions to my observation that the more senior you go, the bigger you have to look; I have several senior nurse colleagues who are in my ‘stunning’ or at least ‘very fit’ categories. But my recent experience as a patient has confirmed my views to a certain extent, and I think raises some very serious questions.
One night early on, when my limbs just would not move much at all, I was tended by this short but very large lady nearly busting out of her nurses uniform. She was quite friendly, and (one of the very few) wanted to know what had happened to me. She seemed to have time for chat, and I was grateful. But her shape! She was very large up front, and then seemed to have a very large bum in her black trousers – sort of ‘S’ shaped or rather ‘S’ shaped. In the old medical textbooks she would have been described as having ‘steatopygia’.
I began to speculate about what might happen if I fell on the floor. Purely theoretical, you understand given I could not move much, and the cot sides were up! But if I were to do so, this nurse would have had no capacity to assist me to get back to bed. She could barely manage to carry her own weight, and when rushing (which she seemed to do a lot), she was often out of breath. Of course, I know she would simply have solved the problem by calling a ‘wardie’, who might have arrived in time to rescue me (they are often covering several wards at night, and can get very busy). All right, maybe not such a good example.
Well, supposing that lying in bed with the cot sides up I inhaled some vomit (you can get a bit hysterical and have some weird ideas when locked up in a hospital bed unable to move). Again, I had no intention of doing so, but just suppose. This woman, this nurse, would have not have had the capacity to even turn me on my side to stop me inhaling more. She was physically just too out of condition.
Several nights later there was another one - again, at night. I had not received my nightly injection of blood thinner Clexane for some reason, nor my Coloxyl with Senna. Waking up after a short sleep, I rang the bell (one of the rare times) to see what had happened. When the nurse eventually arrived I had almost fallen asleep again, and I got a serious shock when this apparition appeared by my side with a sort of miner’s nightlight in bright red strapped to her head. Weird. I got over the shock, forced myself not to giggle, and we had our discussion. When she returned she had obviously been hurrying for some reason, and was huffing and puffing. It was then that I noticed her size. She, again, was both short and ginormous, had on a uniform blouse which did not fit, and uniform trousers over the top of which were large rolls of fat. Obviously slightly eccentric, she actually was both friendly and helpful. But all those questions about size were revived.
So why does a health system allow people like these to be in charge of patient care? It does not matter what their qualifications are, or how caring and chatty they are; when you get down to it, neither one could have responded to an emergency. And why was I noticing such things more at night rather than during the day?
As a patient (even a doctor patient married to a dietitian), it is not my job to even broach the subject of overweight with a professional in the process of just doing their work. And both of my examples had been (and continued to be) quite pleasant and chatty when they were on, and allocated to my ward. I would not have wanted to upset either one of them (and I sort of hope that neither of them reads this book). But why doesn’t the system have minimum standards of health and fitness to include measurement of Body Mass Index (BMI). And if there is a problem, why does the system not take some responsibility to help those employed to look after others, to maintain their own health and fitness? I understand that in most hospitals there may be an arrangement of reduced fees at a local Fitness Club. But I am talking about something more serious than just providing for those who actually want to maintain shape and fitness. I think regular fitness assessments should occur as a routine, and where there is a problem it should be mandatory for staff to work hard on their health and be monitored to do so. It is just simply too dangerous for the patients if this is not considered.
There is another odd observation to be made here, and that concerns night nurses. I reckon if you did a survey you would find that the average weight of night nurses would exceed that of the day nurses. I must admit that I don’t understand how rosters are worked out. It is possible that all nurses have to do their fair share of night duty (which would wreck my proposed research of course). But I did talk to many nurses who seemed to be on permanent night duty, and you have to wonder whether they chose to do night duty because they are obese and know that they cannot manage the pace of daytime nursing or the lifting and routine bathing of patients, or whether for some social reason they are somehow forced to do nights, and then sit around looking at all the gifts from grateful patients.
Before we move on, I need to say that what I have said is in no way sexist, or meant to be disparaging of women; I am trying to make a serious point about a troubling issue that is not being addressed. In fact I came across two male nurses during my inpatient sojourn who were also in my ginormous category. Both were actually tall, and if you looked behind the fat you could see that they were at some stage quite good looking, and might have been very fit as younger men. Both had a very similar shape, though; what my dietitian spouse would have called the ‘apple’ shape. That is they were fat round the waist, with shirts and trousers that were bursting at the seams. They moved more slowly than others, and my impression was that they thought more slowly as well. I watched one of them respond to another patient’s semi-urgent call, and it took some time for them to arrive (which perhaps is more common than you might think), their clinical approach was not really particularly hurried (although that might have been warranted), and they seemed resentful at having their evening interrupted. Sort of “I only work here, I don’t actually have to do anything”… Which came first, the overweight or the attitude? I don’t know. But if as a system we were serious about fitness to nurse, or more generally fitness to work, we might find out.
Health systems should be serious about providing quality of care. To my mind that means employing staff who are patient focussed, and have qualities of empathy and the ability to maintain a caring approach, whatever the personality or current mental or physical state of the patient. In addition, of course, they have to be highly trained, and able to do a myriad of jobs that, at least theoretically, are in the realm of the nurse. I am not sure that truly ginormous people are able to do some aspects of nursing at the acute or semi-acute level, even when they are willing and dedicated. They seem to be lacking in energy, even when they caring and friendly. They would appear not to have the physical capacity to do some jobs. And they seem physically and mentally slow. I think a part of this comes back to a very old adage: “Mens sana in corpore sano” (a healthy mind in a healthy body). My observations, having been a customer of health systems for some months is that we are failing in the ‘care’ department, and that one of the small (or actually, large) signs of this is not ensuring that staff are fit enough to do the job when the going gets tough. It is my belief that health systems have some responsibility to choose staff carefully and one criterion for nursing staff would seem the possession of physical capacity to do heavy parts of the job in the temporary absence of someone like a wardsman. Once a staff member is employed, I believe the health system then takes on a duty of care that includes regular checks on physical and mental fitness, and some access to remedial help if this is required. My belief is that the health system should contribute to the cost of this maintenance of peak health in their staff; it is after all in the system’s interests. It is a matter of occupational health and safety.
I am probably just blowing in the wind. I think the day is probably over for bureaucratic systems actually caring for staff in an optimal way. As long as the paperwork has been completed bureaucrats don’t really require anything else. Risk management seems to be central to bureaucratic thinking, and sadly I am not talking about risk management for the patient (or even for staff). I am talking about risk management for the system, measured by a low level of public complaints, and/or a low level of ‘ministerials’. As long as there are systems in place for reporting on how risk was managed, and all the boxes have been ticked, then bureaucrats and their political masters can sleep at night.
I am blowing in the wind (not just probably). I still believe that if you are employing a person to do a job for you, then you have a responsibility to ensure that they can access your service at no extra cost to them. All staff in a hospital, whatever their level of qualification should have access to free parking during their shifts. They are working for the system; the system should provide. It is slightly obscene that systems believe that they have the right to charge you to come in to do their highly-prised job. How old fashioned an attitude is that? Systems including public hospital systems don’t think like that. They just see staff as grist to the mill of extra income from car parking. “Hey, we are giving you the opportunity to work for us. How you get here, and how much it costs you is of no concern to us”.
So, I can imagine the comments I am going to receive about ginormous and possibly unhealthy staff who may not have the capacity to provide aspects of clinical care? The first response will be: “What ginormous people?” To which my answer will be: “Actually, the ones who may be putting your bureaucratic risk management system at considerable risk!” The second response is likely to be: “You realise, Dr. Martin, that your comments are defamatory, and quite possibly discriminatory?” To which my answer will be: “I know! But I believe that all hospital bureaucrats should have the privilege of spending some weeks in one of their own hospitals.” Oh, but that wouldn’t work, would it? You can imagine the special care they would all expect, demand, and probably get.

Monday, December 13, 2010

A Haiku on Love and Loss

There is no wise man
Has not loved, lost, loved again
And found new meaning

Sunday, December 12, 2010

Taking Charge
The Grape
When you are not well, you can be a bit more clumsy than usual. One evening I dropped a red grape (as you do). It fell to the floor and rolled just in front of the visitor’s chair. There was no way I could reach it. Equally there was no way I could push it out of the traffic zone to the bathroom. I wondered whether to call someone, but despite the fact that there was a small risk of someone slipping on the grape, I thought it was frivolous to press the bell. To be honest, I have tried overall to call nurses as little as possible; they are busy, I am not really ill, and I don’t like troubling people. I try to do as much as I can for myself. So, I save up tasks as much as I can and get them to do three for the price of one bell call.
Anyway, I forgot about the grape until the next day, when I noticed it was more under the chair, but still there. When the tea lady (‘food service officer’) came to deliver dinner, I said: “Look I’m awfully sorry, but yesterday I dropped a grape, and I am a bit worried that someone may slip on it. I was wondering whether you could possibly pick it up for me and put it in a bin.” She looked at me, looked at the grape on the floor, looked at me, thought about it for a moment, and said: “I’ll get a nurse”.
So what is that all about? Why would you ask a nurse with all that training and qualification to come into the room and pick up a grape? The answer is that many people are defined by what they do, or they define themselves by what they are prepared to do. Others define themselves by what they don’t do. Tea ladies seem to have one set of jobs, and don’t deviate from this. There are a lot of things they don’t do, and you can imagine some draconian supervisor drumming this into them. So they get the trolley with meals to the ward, they lift the tray from the trolley, they knock, or say “Knock, Knock”, they bring it into the room and place it on the mobile bed table, and then later, at a set time, they return and pick up the tray and return it and all the others to the kitchen. That’s pretty much it.
I guess they also have their rules, although this (like a lot of things) is never made explicit. A rule that might make sense is that they are delivering food, and presumably this is a clean (though perhaps not sterile) process. I guess that as they go from room to room they need to stay clean and not contaminate the food tray for the next person. So to pick up a grape from the floor would mean the possibility of picking up something nasty that had coated it. Of course they could wash their hands… This theory was suggested to me later when I was at the spinal injuries unit. I had one of the tea ladies bring a cup full of lemon cordial, as they do regularly every afternoon. The cup from the morning was empty and on the bedside table. The tea lady placed the new one on the bed table and ignored the old one. When I pointed out the empty one, “Oh, this one is finished, thank you”, she mumbled something about that being the job of another tea lady (who presumably has the job of picking up the empties). “My trolley is clean!” she said. I suppose by touching the cup, and consuming the contents, I had somehow contaminated the thing. (This fetish about cleanliness is explored elsewhere).
There are problems sometimes. So, if you have just come out the bathroom and are naked or semi-naked, some will avert their eyes and just put the tray down, others will retreat and say they will come back in a few moments, which they do; perfectly reasonable. On several occasions, there would be a “Knock, knock”, to which I would respond “Please come in”, and a hand would appear round the curtain and put the tray on the bed table and then, disembodied, disappear. On one occasion the tea lady did her job – that is she came in all chirpy and wished me a good evening and put the dinner tray down. You understand it is not their job to see where the trolley is in relation to you, nor necessarily to move it. So, unfortunately, on this occasion the bed table was at the very end of the bed, where some all neat and tidy nurse had put it, exactly square with the end of the bed. I looked at it. Right, so I am up here, I am paralysed from the waist down, and the table is down there! Now you could call a nurse; mostly the buzzer is within easy reach. But, ‘taking charge’, I decided to shuffle inch by inch down the bed, all cramped up, until I could reach the table. “Good job”, the physios would have said! Problem; all four wheels on the bed table were locked. So, not to be beaten, I nudged, pushed, jerked the table out from the end of the bed sufficient to turn it, then at some danger of falling over the cot sides, I turned it to be parallel with the bed, and then inch by inch cajoled it, locked wheels or no bloody locked wheels, down to the head end. Straightening out the covers, all sweaty, I sat there triumphant for several seconds before tucking in; I don’t remember what the meal was – I didn’t care.
Another problem occurred on about the third day. A young nephew was part of a group of people visiting, and we needed to clear some space for bags, papers, and flowers. So he moved the tray from dinner off the bed table out into the corridor, and tucked it against the wall. We all went on with our conversation. Well, when the tea lady arrived to collect the tray she absolutely lost it: “You are not allowed to do that... You must not put the tray on the floor outside in the corridor; this is an occupational health and safety risk. Someone may fall over it and get an injury.” We all felt a bit sheepish, but as she retreated up the corridor nobody could help themselves bursting into peels of laughter, and then of course there were a series of jokes at which we all laughed. Seriously, the corridor outside the room was very wide, well lit, and relatively uncluttered. What was someone going to do? Look at the tray and say to themselves: “Oh look, someone has left a used tray in the corridor. I think I will make a beeline for it and trip over it. Then I can sue someone…” Let’s face it, in every single hotel across the world, they leave a little notice on your tray, or actually give you an instruction when they deliver breakfast or whatever, asking you to leave the tray outside your door so that it can be picked up without disturbing you. Why in a hospital would it be different? I suppose we could make up a couple of reasons. First there are patients wandering the corridors, and they may not notice or see a tray. Patients who are just beginning to walk using aids like a ‘rollator’ may accidently wander into it. I think there are probably a couple of reasons connected with our tea ladies. The first may be that their expectation is to just lift the tray off the bed table and place it on the kitchen trolley. Perhaps they have been warned about not picking things up from the floor, like our lady of the grape. Or perhaps, being slightly elderly and a little plump, she had a back problem and the effort involved in picking the tray off the floor was genuinely going to exacerbate an old injury. Or perhaps she was just a grump having a bad day.
Another grump was the lady whose sole job appeared to be to deliver the water jug freshly filled. Before I had my catheter removed I was very pleased to drink lots of water alongside the fruit juice, cordial, soft drink and anything else I could get. After I was free of the catheter, I was much more cautious. On the assumption that it takes about two and a half to three hours to excrete a water load, with peak output at about 90 minutes, I didn’t want to drink much after about 6 pm. IO tried very hard to avoid getting up in the middle of the night, calling for a nurse to get me the toilet chair, etc…. Then I tried to avoid times I knew visitors might come. Anyway my intake dropped drastically, and I was looking more for something that tasted good, or at least a drink that washed out my mouth a bit. My grumpy friend took it as a personal insult that I had not used any of the water from the jug overnight. She would empty the jug with a flourish and replace it with a freshly filled one, all the time muttering her displeasure. Several times I used some of the water in the jug to water flowers on my bedside table, just so I did not offend her. I was also slightly embarrassed to tell you the truth. When you are not well you need to drink lots, Jan had been telling me over and over to drink lots, and here I was actively trying not to.
Some of the tea ladies are delightful, and the more you are a permanent fixture on the ward (like you have been there a week or so), the more likely they are to smile while delivering a tray. You never get to find out their names, and they never want or need to know yours. Most appear to be from Mediterranean or Balkan countries, with only limited English. So one middle aged slightly weary lady would come in and say in a very strong accent: “It is really hot outside today”, and smile. I tried several times to extend the conversation, but either she did not understand me, or that was all she had time for. Next day would be the same: “It is really hot outside today”, and we would both smile, and perhaps I would say: “I am really glad to be in the cool then” to her retreating figure.
One young thing, totally out of place in the company, did stop and chatter a bit, beginning with “So what happened to you?” The conversation was always in short sentences, and she was always looking at people passing in the corridor, as if mentally looking over her shoulder. When she found out I was a doctor, she revealed that it was her intent to become a med student after she had finished her first degree. Bit by bit she warmed to the conversation, but always somewhat furtive; again I had visions of the draconian supervisor lurking in the background just to catch her out. She also delivered the evening drinks, and these occasions allowed her to ask for instance what med school was like, and why I had chosen to become a doctor. Funny how much you can enjoy such little conversations, how much difference they can make in long days, even though I always seemed to have lots of friends and family members visiting. She was very much the human face of the tea ladies; I hope she didn’t get into trouble for stepping even briefly outside her role.
I had a variety of experiences with wardsmen (‘wardies’), but they were all memorable in one way or another. The initial experiences were fleeting. I was lying on a trolley having been examined late at night shortly after arrival in Accident and Emergency/Admissions. I was physically helped to roll onto my side, while a board and a plastic sheet were placed underneath. Then I was rolled the other way so they could pull the plastic sheet through. A wardie and two nurses then pulled on the plastic sheet to slide me across to a bed, moving my 95 Kilos with surprisingly little effort. You feel alternately terrified and secure. What are you guys doing with my body? Am I safe? Oh right… How did you do that? This process was to happen time and again over the first few days as I had Xrays, MRIs, and moves of wards.
I remember one occasion early when I was moved from the bed to a wheel chair to move somewhere. The wardie suggested I “swing my legs over the side”. OK, that was the first problem. With help we did that, but I am not sure he fully understood I could not bear weight – there was just nothing there… I was asked to clasp my hands behind his neck, and then holding me tight he tried to straighten – with great difficulty, almost dropping me. He swivelled with me on board, and with (I imagine) a great sigh of relief he half dropped me into a chair. I remember the momentary panic as he was destabilized. I also remember that he was the only wardie who actually smoked. Very strong, stale smell; all the more pungent because I had given up 35 years ago. Then other thoughts crept in. For instance what had I done to his back? He took an enormous risk carrying my weight – was he covered under hospital rules?
That was the only time I felt in physical danger. While the wardies were respectful of the practice I was putting into learning to transfer myself, they never let me do anything stupid, they always checked that transfers were going to be OK. They supported what I was trying to do rather than taking over.
Generally they were cheerful people. There was one in particular who arrived at 6am every morning when he was on duty, literally bustling into the room with his bucket to swab the floor. He cleared all the bins, checked around the bathroom, did the floor and left still cheerful and chatty. He was the one who happened to be on duty during my days of bowel problems. Every time there was a difficulty he would come back cheerful as you like, clean up floors and anything else, and then all bustle and cheer he would let me know he would see me tomorrow. A couple of time there were slow times. With an eye on the door he would ask me what had happened to me, or check on progress.
One day I was telling him of my successful exploit to change a toilet roll. Both had run out, I didn’t want to call a nurse, and I had noticed (while sitting there contemplating) that there was a neat pile of new rolls above my head on a shelf. With a bit of manoeuvring of the wheelchair and my position, I could lean on the handicapped support, reach up and grab a roll. I was very pleased with myself, and no damage had been done. “Oh, you shouldn’t have bothered with that, Graham. Just get a nurse to call me and I can come and do that sort of thing.” And then we had a discussion about trying to do things on your own and independence vs dependence.
On another occasion, he asked about my karate background, and then admitted that as a youngster he had tried Taekwondo, but later shifted to a full contact Karate, which he loved and had continued. I had wondered where he got the body shape – broad shoulders, trim waist and a sense of power as he walked, and an energy and self-assuredness.
Later I came to learn that other wardies were into maintaining fitness through all sorts of means, but a surprising number had followed the path of martial arts. After several brief contacts, they would hang about in the room, looking as if they were busy, and then say: “You do Karate, don’t you?” And the conversation would blossom. Of course my passion for Karate was no secret, and my sadness at the possibility of losing it was also apparent. As I was being lifted across to the bed, I would use my upper body strength hanging onto the monkey bar, taking as much body weight as I could. It seemed to be a surprise to both nurses and wardies, but to me it was part of my fitness regime, part of my promise to myself to try to keep as much of my body working as I could manage. Anyway, the conversations were always brief, with furtive looks at the door and corridor beyond. There was an obvious anxiety that they might be found out to be ‘not working’. I imagine the fact that they were doing supportive psychotherapy with an old man grieving his loss of body integrity, vitality and fitness would have never come into any discussion with a charge nurse.
One of the male nurses did the same thing, talking about his love of martial arts, while furtively checking no-one was listening. A tall well-built chap, I had always thought him a bit taciturn, a bit quiet and withdrawn, focused on what he had to do. It was a pleasant surprise to hear him open up and not only talk about himself, but also discuss the future in terms of the best style for his young son. Another male nurse from the Philipines was seeking some weapons training – not something we focus on in our style. But through a friend of a friend I emailed, I was able to find a local weapons school to meet his needs.
The Wardies are treasures in a public hospital. They know their own limits, are happy to do shit jobs, and bring a spark of light to dingy wards. Treat them with respect. In fact with all the ancillary staff who do such great jobs, you will get more from them if you notice them, greet them, and treat them with the respect they are due.
A word to the wise: “I am sure that hospital rules constrain the staff from doing even small acts outside of their specific role. This is not their fault. Be kind; be generous. Smile, and try not to make their day miserable”.

Sunday, December 5, 2010

Haiku on 'Feeling Down'

Black bile drowning the mind's eye
Much more than sadness
Taking Charge
I am sure this is not a topic for polite society, but when you are paralysed from the waist down, it can be become an obsession. Shit gets everywhere. I could add ‘if you are lucky’. And here I have had some hysterical episodes. If you can bear to, please read on. If you really can’t, then feel free to skip this chapter. At the end of the day it has the same essential message, which is ‘Take Charge’ with the rider “If you possibly can…” You may of course need help and cooperation to get you to the point where you can take charge.
So what I have is some problem (maybe an embolus from somewhere), that damaged my spine at the level of the edge of the ribs (T6/T7 to be technical). Started on the right side, went down all of that leg, then the next day decided to come up the left leg to not quite the same height (T9/10). So what this means is that anything below this level is not served well by my nerves (sensation and action, automatic or not). I have a major problem with bowels, which is from nerve damage (‘neurogenic’) and I guess everyone expected that I would have this problem given the story, and the level of damage. What nobody was able to tell me was how much it will improve, though the signs after the first month were reasonably good.
So from the beginning, I was unable to go; just packed solid. None of those funny feelings you get, not much in the way of those gurgling noises (it has a such a cute name – ‘borborygmi’), my regular early morning pattern disrupted, and an absence of that squeezy feeling you sometimes get after eating a meal (‘gastro-colic reflex’) simply because a full stomach sits on top of the large bowel. Just none of it there. A slightly protruding and more flaccid stomach than usual, full of… (Actually you often hear of various people being called ‘full of…’ I think I’ll stick with the current problem).
By day five, there was beginning to be some concern in the medical camp, so I began on Movicol which is a softening agent (it contains macrogol or polyethlene glycol, a type of osmotic laxative – basically it absorbs and holds water). Some people don’t like the lemony rather sweet, sickly taste, but I found it alright. Just drink it down twice a day, because the nurses give it to you, and because you have to. “Get on with it”. They also gave me a couple of Coloxyl twice a day. This is intended to increase the bowel activity – that is gripe you a bit. You need that gripey movement to squeeze things through, and of course most people have that without having to take pills. A couple more days with a marked lack of activity led to increased concern levels and there was hushed talk behind curtains of a Shaw’s Cocktail. Oh dear. What was I in for?
So one night this really lovely, caring, mother figure with braided hair, a nurse from Soweto in South Africa, was given the task. The recipe was explored, ingredients gathered, Senna crushed, Agarol poured into warm milk, lashings of sugar added, and down it went. Yeah, and…? Yeah, and not much...
There was a gradual increase in movement perhaps. Some wind passed without my really feeling it; there again, that was a very good sign because it means something was going on, even if I could not actually feel it. After 36 hours there was some liquid as well when I went to the toilet. So the morning after that, following a serious medical discussion of consequences and the need to really get things on the move, the scale of things was increased – 2 Microlax enemas. Nothing much resulted. So the routine of two sachets of Movacol, and 2 coloxyl tablets twice a day was continued, to which they added Senna, and planned more Microlax. Jan swears by Kellog’s Guardian (‘Everyone needs a Guardian’), so this had been added to my breakfast routine. It contains something called Psyllium which absorbs and holds water to form bulk.
In the meantime I had transferred to the neurological ward from the semi-acute ward. The next morning we planned microlax times two, which was given at 6.15am. By 6.45am I just knew that something was happening – strong movements, feelings in the rectum (at last the feelings beginning to come back), and some passage of wind. I rang the bell at 6.50am. No response. At 6.55am I rang the bell again (yeah, I know I was being precise). No response. At 7am I rang the bell twice. No response. At 7.05am I rang the bell 5 times. No response. At 7.10am I rang the bell again 5 times again. No response.
You will realise that being paralysed for the moment, I could not actually just step out of bed and toddle off to the loo, even if it was en suite, and about 10 feet away. My legs just would not bear weight. So I needed lots of help being lifted to transfer from the hospital bed to a bathroom wheelchair with four small wheels, and a seat rather like a toilet. It can be pushed to sit right over what looks like a normal toilet to position me, the two front wheels being locked down for safety. I actually also needed some help getting pyjamas off and then back on. Oh, and this is embarrassing... I had to wear some sort of nappy, and had come very slowly and reluctantly to accept that the one that gave me the best sense of confidence and security was a ‘pull them up’ (PTU) - just like my grandchildren have worn. Anyway, they are a fairly tight fit, and I couldn’t get those down either.
So at 7.15am, 2 nurses arrived, assessed the situation and then called a Wardsman (a ‘Wardie’) to do the lifting. Oh dear, yellow baby-type poo all over the bed, and all over me. As they wrestled to get me as quickly as possible into the toilet chair, it got all over the wheelchair, all over two nurses, the wardie, and there was a steady trail leaked into the bathroom. It was all acutely embarrassing. How are the mighty fallen! When I related the story later, Jan said: “That will larn them; should have come as soon as you rang the bell”.
Well, you get over the immediate embarrassment, and to be honest there was some laughter in the room, while I sorted out in the bathroom. That was relief – yeah, in both senses. Problem fixed? Certainly a good result, but not yet the end of the saga. I showered as carefully as I could (and that’s a story for later), dried off, shaved, cleaned the teeth, put a new T-shirt on, and dragged myself and the chair out of the bathroom in search of clean short pyjama pants, a larger nappy, and a return to bed courtesy of our wardie… with profuse and repeated apologies. “It’s not a problem”, he said, “Hey, shit happens”. Nice man.
So what happened? Why didn’t they come (knowing they had given me 2 Microlax enemas)? Should I have been angry, frustrated, blamed them rather than me? Well, you know, as I have said elsewhere, life is full of systems, and I had just fallen foul of one - literally. As the type of doctor I am, doing the kind of job I do, and despite all my training, I have no knowledge of ward systems. They have evolved over time since my early days on wards, and I had not been a patient in a hospital ward before. The story is that 7am is a nurse changeover. It is sacrosanct. It is necessary to ensure that the day nurses are fully briefed about all the patients and their progress. It begins somewhere about 6.50am I think, and finishes about 7.10 I think, depending on reports and necessary discussion. Nobody told me this. There was no discussion of how to cooperate with nursing staff when you are first admitted. You just have to learn… And if you want to begin to take charge of some of your care in hospital and at least make a contribution to your own health improvement, then you will have to learn the local systems as soon as you can. Ask one of the nurses when you first arrive: “When are changeovers?” If you are really ill, and can’t ask for yourself, ask a relative to find out. It will save all sorts of aggro.
There really should be a practical little book or folder on each bedside table like they have in every hotel I have ever stayed in, telling you about routines. “Breakfast is at…, lunch at…, and if you want a hairdresser, or want to order in a Pizza, please phone this or this number”. Unbelievably there was nothing like this in the hospital I was in. There was not even a booklet explaining how to use the bedside phone; I never did find out how to dial out of the hospital, I just gave up and pretended the phone was not there. Luckily I had my precious iPhone within reach at all times, my little lifeline to the outside world (more of this later). But seriously, why is there not a booklet or folder: ‘Introduction to the Hospital; things you really need to know”? You know… ‘Tea ladies do not pick up grapes’, ‘Nurses do everything and are very busy, particularly at meeting times’, ‘Doctors have 5 minutes to see you and are not interested in idle chit chat – only any new and exciting symptoms which might need to be expensively (or is that extensively?) investigated’. At the start of this paragraph I used the word ‘practical’. Systems have some insane belief that you might be interested in the history of the hospital, how much money it soaks up per annum from us as taxpayers, how rapidly it has grown over the last 60 years, the 351 most generous benefactors, the latest bit of you beaut equipment, and the current board of governors. I can guarantee, as a current patient, all I wanted to know was when nurse changeover is, how to use the phone and how, after a month in the place, where I could get a haircut.
If you have this sort of practical information, you can plan a bit of the day for yourself, which reduces embarrassment, avoids aggro on both sides, and gives everyone a sense of cooperation. You are helping the system to run more efficiently. So, I thought about it deeply, and planned to ensure that I was ready to go the bathroom with all my bits collected together by 6.25/6.30am. If a nurse comes in by chance between 6am and 6.15am, I just ask if it would be OK to be in the bathroom before 6.30am, and did they want me to ring the bell? If no nurse came by chance, then at about 6.15am/6.20am, I rang the bell, gave them 5-10 minutes to get there and find our wardie. 20 minutes+ on the toilet (with book), 20 minute+ shower (hey, I was learning to use a wheelchair) and other things, and they were very happy for me to ring the bell at about 7.20am or a bit later to get back into bed. They come quickly, had a smile on their face (mind you they are the new morning shift), and there was never any aggro. Oh, and by that time, breakfast had arrived!
Was it my responsibility to think all that through? I think so. As I have already said, I was not ill, even if I was currently very incapacitated. The brain was still working, and eventually I fantasised I would be literally taking my life back again. I didn’t want to be too dependent on others, and dependency starts the minute you get back into bed, breathe a sigh of relief and ring the bell to get a nurse to put your PTUs on.
The problems were not yet over, of course, and I had yet to find some sort of balance for the bowel, which was now very much on the loose side. There must have been some neurological improvement; I began to get a little sharp pain in my rectum just 2 seconds before I had an accident. Mind you, I couldn’t actually stop anything. So if I was in the bathroom, having just completed my shower, I could whizz over to the toilet and start the whole process again, wait for the explosions to disappear, clean up,,, again, and then get back under the shower to ensure cleanliness.
Before this little warning sign, I would be gaily washing my hair, hear a loud explosive noise, and see a little cow pat in close proximity to the oversize shower drain. I now know why it was oversize - it was so you could sluice everything meticulously down it if you had to!
A really bad day saw me go back to the toilet twice, then get back to the shower for the third time, then go to the sink to brush my teeth and shave, only to find a little doggy-do under the chair when I looked down. The problem with this was that spray from the shower does not reach this far, so the only way I could manage was to reach down and use a paper towelette to clean it up. Of course this meant I was squeezing my tummy, so as I wheeled myself over to the toilet to deposit the towelette, I left a trail. I felt rather like a dog with worms. Anyway at this point I was exhausted, disappointed, and had lost any sense of embarrassment. So I did, for once, call the nursing staff – who were kindness itself... I don’t know what they said in the tea-room later, and I don’t really care. At that point, I just wanted someone to take over and get me back to bed.
Of course even this was problematic. I had to move the chair close to the bed and lock the wheels, get the bed height so that it was slightly lower than the arm and the seat of the chair, and manoeuvre (edge) across the chair toward the bed, lift my worst leg up onto the bed to act as an anchor, and then roll over onto the bed. On the occasion we are talking about, as I lifted myself on the armrests of the chair to get closer to the bed, there was a last mini-explosion followed by a little brown puddle on the floor under the chair by the bed. So all my cleaning was for naught; the poor nurse had to reclean my undercarriage, dry it, apply the paw paw cream to avoid bedsores, and then help with my PTUs. I just curled up, defeated, and went back to sleep.
But you can’t stay that way. You have a genuine problem, and while everyone can offer advice (medical or otherwise), at the end of the day you are the one who knows your own body, you know the feelings and warning signs you have, and it is up to you to try to take charge and work out what may be best for you. At the time of writing, I had an emerging pattern. I got little urges in the morning and tried hard to make sure I was as empty as possible as part of the morning ritual, which currently took about an hour or so. You have to put up with the numbness you get from sitting on the toilet wheelie for all of that time. You have to ask someone to double check you are clean, check for skin damage, and put some cream on to avoid sores. So far so good. You also have to have some sort of distraction – a good book, or Sudoku from the paper the day before, or some sort of word game on the iPhone. Anything to help avoid the mind-numbing boredom of spending so much time in the loo.
Finally it is worth talking about all those things that can upset a delicate pattern. Because of the injury, there are two extremes you want to avoid. On the one hand you really don’t want to become constipated. First it is very uncomfortable, second staff will insist on upping the ante until you get a result, and then you can get into a vicious cycle. On the other hand you want to avoid diarrhoea, mostly because of the loss of control; you can never quite get to the bathroom in time.
So, one of my lovely kids bought me my favourite lollies (sweets) – Licorice Allsorts. The problem is that they are addictive, so you just have to have another one… Of course licorice is an aperient. Now why didn’t I think of that when I was just having another one. Predictably the morning after we had a ginormous and unexpected result. Mmm, must remember to limit myself to one or two.
Another day Jan brought in some Sushi and some cherries. The dinner was not very appetizing again, so I was delighted to talk while we shared our makeshift dinner. Of course, too much fruit can ‘kill’ you. Again fruit can act as an aperient, especially if you gorge out on addictive cherries. I think that contributed to one of the cow pat days.
I have had a theory that I might be sensitive to the lactose in milk, and over the years, I have reduced the intake (or used lactose free milk when you can get it), and this seems to have helped to regulate my bowel habit. Of course in hospital, I returned to the habit of having 150mls full cream milk on my cereal in the morning, as well as yoghurt; I suppose just because they were available. Over the next few weeks I just assumed that my recurrent looseness and explosiveness was related to my neurogenic bowel. It took several sessions of thinking through to decide to stop the milk and yoghurt again. Hey Presto, after 3 days my diarrhoea began to settle, and my habit became more predictable to the point where I had some confidence to stop wearing the PTUs.
Finally, the problem may result from medications. Again in the past I have been somewhat sensitive to aspirin, and had had minor gastritis that could have been blamed on aspiring taken for migraines. Because the doctors believed I had had an embolus they had recommended I use a blood-thinning agent like Heparin, so I had been having injections every day. They had also been giving me aspirin every morning in the belief that it would reduce the likelihood of deep vein thrombosis. All perfectly reasonable… Except after some weeks, my stools began to get darker in colour than usual. I would not have said they were actually black or even tarry; that would have freaked me into telling a doctor (which would have led to the inevitable investigation cycle). I watched for several days, and then the story clicked in my head, and on the next day I simple told the staff I was not taking the aspirin any more because I believed it was causing some mild gastritis. There was no fuss, just some more discussion, and then aspirin was struck from the drug chart. Two days later, the colour had returned to normal, and has never been that darker colour since.
Bowels are a problem after a spinal injury and, whether you like it or not, you just have to become a stool watcher. You also have to watch the effect of diet. See, if you can rush off to the toilet after eating too may cherries the day before, it just becomes a bit of a joke. But if it takes you longer than expected to get there because of the mechanics of wheelchairs and transfers, then it is much more of a problem, and involves others to clean up the mess. You just have to give it some thought. You know your body; you know your personal history regarding what diet suits you, and what may upset you. Work it out and take charge. Only you may be able to put the jigsaw together.

Sunday, November 28, 2010

Taking Charge
The first time I realised how strongly I might have to stand up for myself against the hospital system was on day 4.
After I had been through the emergency system I went to a four-bed ward in general admissions. At that stage (day 2) when you are very frightened about what is happening to your body, and have no idea what the future holds, and you are in pain from something that does not yet make sense, you are just grateful to be in a reasonably comfortable bed and laying down. "Someone else can take charge; I am sure they will know what to do."
So you don’t mind being in a four-bed ward, listening to the 50 year-old man next door waiting overnight for his cholecystectomy (surgery to take out his gallbladder) the next morning. Poor fellow was obviously experiencing waves of recurrent pain, whimpering and calling out to the nursing staff for medication. Oddly, he made the most noise when he had blood taken – once in the evening, and then again the next morning. He was not happy, told the nurses it would be difficult to do, and when they had trouble getting into a vein on a couple of occasions he really let fly. He positively wailed as the needle went in each time; I had not heard that before. I guess he was just distressed overall, in pain, and this was one more assault he felt he did not need. Given the pain he was in, there might have been a degree of peripheral shutdown of circulation, with slow blood flow through not very good veins. That always makes it difficult to get into a vein, but the rules have always been that you wait until you are sure you have good vein, don’t try unless you know you can succeed, make sure you get it first time. The junior sounding nurses really struggled with him, they sounded quite anxious and perhaps a bit frustrated, and so they rushed it. After 3 attempts they still did not have blood. No explanation seemed to mollify him. I guess they later brought one of the blood ladies in; they are real experts, and ooze confidence. They wheeled him out the next morning, all prepped and a bit sedated; I hope his operation went well.
Anyway, the point is I didn’t mind the moaning and frequent rustlings, the regular observations, and the lack of sleep. I was too unwell to care. Through the day, a series of people came and took the story again and again and went over the examination, a registrar I was later to learn was the senior in neurology, a slightly harassed consultant keen to get away for the weekend (don’t blame them!), and then a junior registrar. I clearly needed to be taken over by the Neurology team, but there was no bed available on their ward. So for the time I just had to stay where I was; well, no problem.
As I said in the opening chapter, I have had the most fortunate of lives. My older son is a gastroenterologist, and his wife is an ex-Intensive Care Unit nurse, and they arrived on Saturday (Day 3) to provide support. After I had described the story, rightly or wrongly my son made contact with several specialists (including the slightly harassed one, discovered in a shopping centre) to discuss what was thought to be going on, and to find out who would take me over after the weekend. He then went through the notes to ensure his father was being looked after properly; everybody needs a champion! My daughter in law started monitoring nursing practice. You never know what impact this has on staff. Are they affronted? Does it make them anxious? Does it change subsequent attitudes to you, one way or the other? I guess what my kids were trying to do was to establish that I worked in this hospital, had some place in the world, and deserved the very best of care, and that external professionals were watching the care I got. But that is so awkward isn’t it? Doesn’t everyone have a place in the world? Doesn’t everyone deserve the very best of care? Who champions ordinary folk? Who walks with them through the system?
Anyway the traffic was beginning to build up in my area of the four-bed ward – a series of professionals but, increasingly, more of my relatives including grandchildren. I guess we were beginning to disrupt things a bit. So in the afternoon I was moved to a single room, though still on general admissions. What a relief. We had some space, a private toilet the kids could use, and could close the door to protect the ward from our hubbub. At one point there were 11 people in the room, from my father aged 90 looking sad and perplexed and a bit overwhelmed by it all, down to Oliver aged 5. “Grandma what’s that?” “It’s a wee bag.” “Oh (rather long pause). What… is that wee?” “Yes Ollie.” “Yuck… do you have to have that because you are old, Grandpa?” “Something like that, Ollie.”
Strange isn’t it? Disaster sometimes brings out the very best in us. We had one of the best family conversations sitting round the bed. We tried to work out what might have happened, but then moved on to recent events (my father’s 90th birthday party which had also brought the clan together), future dreams (a young nephew and niece just about to become parents for the first time) and the general chit chat of family members catching up. Our family has a long history of punning, so we laughed ourselves silly at such things as “You had better not make any complaints about the hospital system in your book; you wouldn’t have a leg to stand on!” There is nothing like family, and silliness, to make you forget the fear and uncertainty, and leave you warm, well-loved, and ready for a long sleep. So I settled into the depths of the land of nod about 8pm.
At 11.30pm there was a rude awakening. A wardsman (a ‘wardie’) woke me to let me know I was being moved to the Management and Planning Unit (MAPU); still no bed on Neurology. Watching someone else pack up your meagre possessions in hospital is always disconcerting. In the transfer the day before we had mislaid my joggers (not that I was likely to need them for the moment), and it had taken a bit of a hunt to track them down. Funny how such things as joggers take on a special meaning when your legs don’t work – sort of ‘joggers as talisman’. You make yourself little promises to help reinforce the challenge of recovery (“As long as I can see them I just know I will be able to use them again”). Anyway this time they were in the cupboard. So possessions, potted orchid, joggers and body made the transfer to a trolley across a 'Pat Slide', and we began the second of a number of moves.
I suppose I had thought we had made some sort of case in General Admissions (GA); I am a doctor, I work in this hospital complex, I am fortunate to be able to have private hospital cover, I am likely to get lots of visitors - family, friends, colleagues, PHD students, staff – and I would really appreciate a single room. I had already appreciated the single room in GA for about 8 hours. You don’t think clearly when you are woken from a deep sleep after only a few hours, so I didn’t think to go over that ground again. And the wardie would have had no influence anyway. His job was to translate me safely; nothing more. So I was seriously upset to find myself in another four-bedded ward, where the other 3 occupants were all women. What should I do? Should I jump up and down? Yeah right… It was past midnight by this time, so after much thought I decided to sort it out in the morning.
As often happens when you are woken from a deep sleep, I just could not get back to it. I lay there a long time listening to the chatter at the nursing station which culminated in a telephone conversation “Yes, that’s alright, we have plenty of beds at present and several single rooms.” “Several single rooms… Right.” I pressed the buzzer, explained that I had difficulty sleeping, had overheard the conversation, and asked if it were possible for me to be moved to one of the several single rooms. I went on to tell the nurse all that had happened in GA, a bit about who I was, the likelihood that we would disrupt the four-bed ward with all the comings and goings. I explained that I had put on record my wish to get a single and/or private room, and in fact had been transferred from a single private room downstairs. She explained that it was never that simple, that they might have to reserve a room for infective cases that, even if I was moved, I might have to be moved back if there was an infective case. But eventually she went to consult a superior, and within a few minutes I had been shifted to Room 20. It felt like I had won a battle. Peace, quiet, and sleep.
I guess I had just been lucky to overhear the telephone conversation. Yes, I know, you shouldn’t listen in to other people’s conversations. But in these days of mobile phones, you don’t have much choice, do you? I have even heard people making the most ordinary of arrangements whilst peeing in the loo of an airport lounge. I guess you could call it multitasking, but I often get the urge to go over and ask into the phone “Do you know what he is doing while talking with you?” Never had the courage, of course. Personally I have always been a bit too anxious to even answer the phone, on the grounds I would fumble and drop it down the loo!
What if I had not overheard the conversation? I guess I would just have stayed in the four-bed until morning and tried to work it out from there. So I guess I got lucky to overhear the conversation. But then, I did have the confidence to take the opportunity offered and follow it through – even at midnight or whenever it was. But again we need to keep asking that question – “What if I am just an ordinary person?” Would I just accept my lot, settle down and go to sleep? Would I have been allowed to change beds and rooms in the middle of the night, even if I had asked? How come no-one ever asks you about your needs?
Peace, quiet, and sleep - until the nursing observations at 5am. And so the day unfolded. I tried to go to the toilet, and had a shower, cleaned the teeth and shaved the stubble of two days; all on a steep learning curve about how to do these things from a toilet wheelchair. Can you reach down and unlock the wheels without falling off? Can you propel yourself around the bathroom using a combination of the handrails, the basin and a plastic chair (more of this later)? Finished, I rang for a nurse and a wardie, and was lifted back into bed, fresh clothes put on, and an incontinence pad stuffed down the back of my underpants – for security. The breakfast tray arrived, was emptied and removed. My senior researcher brought coffee and discussion and The Australian (such luxury, I never get to read the newspaper); my secretary called in with some tasks left over from the previous day. A steady stream of friends, students, staff and colleagues drifted through. I was visited by the Neurology Team, examined thoroughly and warned about some of the tests that might need to be done. No sooner had they been discussed, but I was off for an echocardiograph (looking at the valves of the heart to see whether they might have fired off an embolus), or off for an Xray of my tummy, by now uncomfortably distended and inactive. That night I slept well.
I settled in to some of the ward routines, and much of the second day on MAPU was more of the same - observations taken four times a day, medications by mouth, heparin injections into the dartboard of my stomach, examinations from the team to assess progress, and my colleagues with coffee and papers. The steady stream of visitors continued, and family members came by when they could. Feeling well-loved, but exhausted again, I was just beginning to think about settling for the night when a nurse came in and announced that I was going to be moved to the Neurology ward. This time, despite the events of a pretty exhausting day, I was bit more prepared. Was I going to a single and/or private room? She bustled off to ask, and returned with the news that I was going to a four-bed ward. I must have looked fairly crestfallen, because she went into an explanation that it was not her fault, that she had no control over these things, and she was sure they would move me to a single room as soon as one became available. I explained that I understood her dilemma, but that I would not be moving unless I went to a single room. I might be incapacitated at present, and not have any power just now, but I did have some rights. I had asked for a single or private room ever since GA. Given she could not take any of the decisions, would she please ask the charge nurse to come and see me?
Several minutes later the charge nurse arrived – quite literally ringing her hands. She, too explained that it was not her fault, that she had no control over these things, and she was sure they would move me to a single room in Neurology as soon as one became available, but I just had to be moved tonight. She continued to ring her hands. I went back through my explanation… Look, I am a doctor who works in this hospital complex. Though my legs have given way, luckily my brain and the top half of me are still working well. I am not ill, just incapacitated at present. I need to continue with my job as far as I can, up till Christmas, and will continue to have a steady stream of colleagues, students, family and friends visiting me. All that would just disrupt a four-bed ward! It does not make sense to park me in a Neurology bed in a four-bed ward. I would be delighted to move once they have organised a single/private room. I wasn’t being difficult… Nurse continued to ring her hands, and went back into the fact that she had no control over these things. So I asked who controlled the process? The Bed Manager… I said that I appreciated I was making her life difficult, and asking her to decide things that she could not, so would she please ask the bed manager to come and see me. She thought he might be a very busy man, but did agree to phone and ask. She returned saying he was too busy to see me. I shrugged my shoulders. She left looking most uncomfortable and (you guessed it) still ringing her hands. I felt uncomfortable.
Half an hour later (say about 9.30pm at night) in the semi-gloom after lights out I was visited by a man in his 40s in shirt and slacks, looking harassed, slightly sweaty, with his hair all over the shop, and carrying an official looking clipboard. The Bed Manager, poor chap. I thanked him for coming and told him I understood he must be very busy. He explained that he had a job to do and that I was obstructing it. MAPU was only ever short term, and I was destined for Neurology. There was a bed on the Neurology ward, and he was determined to move me from MAPU to the four-bed ward despite my protestations. Sort of like a game of chess – Bishop to Queen’s pawn 4. Keep a deadpan face, no emotion showing. Don’t let your opponent know what you intend in three moves time. This is just a game; it’s not about people, or providing the most relaxed and happy conditions for them to get better. It is just a strategic move.
As pleasantly and gently as I could, I went back through the story ‘Look, I am a doctor who works in this hospital complex. That makes it a bit difficult for me, and there are issues of confidentiality. Though my legs have given way, my brain and top half are still working well. I am not ill, just incapacitated at present. I need to continue with my job as far as I can, up to Christmas, and will continue to have a steady stream of colleagues, students, family and friends. All that would just disrupt a four-bed ward! It does not make sense to park me in a Neurology four-bed ward. I would be delighted to move once you have organised a single/private room.’ There was more discussion, but I reiterated my position that I would be very grateful if he would find me a private room, even if I were to be an 'outlier' from Neurology on another ward for some days. If they were unable to do that, perhaps they would advise me on how to transfer to a private hospital. He asked me if I was refusing to be moved. I said I wasn’t being difficult, but yes, I refused to be moved. He shrugged his shoulders, looked even more harassed, and said as a parting shot “I will take it up with the ‘powers that be’ first thing tomorrow morning”. That sounded serious, but again I felt I had won some sort of battle – even at (by this time) 10pm at night. I slept.
The following morning, I was visited by the Nurse Unit Manager. A delightful and straightforward person, very proud of her ward and her staff, she told me that she was not sure what all the fuss had been about. She had given instructions only the morning before that, as a member of staff, my wishes for a single/private room should be respected. She apologised for all the discussion. I apologised for upsetting any of her staff (if I had), but I had kept my cool, had explained that I understood that they could not take those kind of decisions, which was why I had asked to see the bed manager. I complemented her on several members of staff (whom I named) who had been especially kind to me. She was pleased with the feedback. We parted friends, and over the next few days had a couple more discussions about systems and people.
Three days later, and with much regret given some emerging relationships with the great staff on MAPU (several of whom did martial arts of one sort or another – but more of that later), I was moved to a single room in Neurology. My neurologist called it the ‘quietest room on the ward’. Dear man has never stayed overnight in the room. It has the staff toilet on one side, the ward sluice on the other, and sits opposite the two ward storerooms where all staff congregate from time to time during the day. If you are into gossip, room 56 is the one to be in; you hear it all… Hey, I don’t really care. The door can be closed, it is private when I need it to be, and I felt comfortable (when there were up to 6 or 7 people in the room at any one time) that we are not disturbing others.
So get this! The very next day, the charge nurse came in, all business in plastic apron and rubber gloves (apparently the notice on the door, left over from the last resident, said something about barrier nursing). She did introduce herself, but then got straight down to business. “Look, I am sorry to be the bearer of bad news, but we are going to have to move you to a four-bed room. We have a palliative care patient being admitted, and both she and the relatives will need peace and quiet. I am so sorry, but I am sure you will understand.” “Yes, I do understand. I have nursed and worked with people in palliative care. I understand their needs. And I understand that I am not ill, just handicapped. But I understand that I am in a room that has been designated private, given I signed all the papers today. I am in a difficult position. I am a doctor who works in this hospital complex. That makes it a bit difficult for me, and there are issues of confidentiality. Though my legs have given way, my brain and top half are still working well. I need to continue with my job as far as I can, up to Christmas, and will continue to have a steady stream of colleagues, students, family and friends. All that would just disrupt your four-bed ward!” “You are in a private bed, but you are in the public system; I am sorry, but we are going to have to move you” (getting cross). “I am sorry too, but I refuse to be moved; you will have to find another room for your palliative care patient. I do have sympathy for them; after all I am a psychiatrist. But at this point I have to do the best that I can to provide conditions under which I can get well. If you have to move me, then I would be grateful if you or the bed manager would find another single/private room – even if I become a Neurology outlier. If you can’t do that, then I would be delighted for you to explain to me how I can be transferred to a private hospital.” “We are going to have to move you” (very angry now, to the point of having lost it). “I refuse to be moved.” “We will see” (gets up and leaves, furious). Well she has never come back, and I guess they found another room for the dying patient. I guess our nurse continues to think I am a prick!
I was certainly left feeling very uncomfortable. Was I being selfish? Probably. Did I feel guilty? A bit. Should I have responded in a different way? No. No-one else in this system is going to stand up for me. I had to be as strong as I could. I also had to be very sure not to lose my temper; this is no time for temper tantrums – just as much logic as you can muster to back up your own position. In attempting to take charge of your own care, just work out what you want to say in defence of your own position, and then repeat it like a mantra. Let everyone else get angry.
How come they just play bed chess? Well, there are some clinical situations that trump most other reasons for wanting a single bed. One is infection. There are some nasty infections around, and some can be seriously problematic for hospitals (MRSA and VRE as examples). So isolation is necessary, with barrier nursing. Another case might be a dying patient in palliative care, the situation I came across. However, in the absence of those, over and over you have to conclude that the system is about the system, not about the people or individual preference.
Actually nobody thinks about personal preference; they just do what they always do. Even if they think, they really don’t seem to care about you and your needs. That is probably a bit unfair, but I built up lots of evidence for it, the longer I stayed in hospital. I think there are also some problems being a private patient in a public system. The advice I had from my consultant was that I would get all the investigations I needed and better care staying in the public system. So I went private from the bed point of view because it was the only way I could see to try to get some privacy and, I suppose, some privilege. But actually I think it builds some resistance from staff. Nobody working in a system likes anyone to appear to have any sort of privilege. You may be a senior doctor, and have given 40 years of your life to the public system, 10 years of it in Queensland, but as a patient people want you to be the same as anyone else, and not try to act special or be special. You are just part of a system.
It is clear that the junior and/or part time nurses have no control over the systems of the hospital (and cannot be expected to negotiate anything on your behalf). You cannot get angry with them. The system demands a single room (infection, palliative care or whatever), the bed manager plays bed chess, you get moved. Even the charge nurse has no real control over these things; they are ordered to make a change and they are expected to follow through, whatever the personal cost to anyone else. Again, you can’t really get cross with them either – they are just trying to do their job, and meet competing needs. In my experience the nurse unit manager may be able to negotiate these matters, but even they can be over-ridden. So the nurses (of whatever seniority) are there to provide the best of care to the patient, but the system may, at any time, over-ride quality and/or continuity of care.
I am fascinated by the timing of these things. At least the first two episodes (from GA to MAPU, and MAPU to Neurology) were at night. What is that all about? To be truthful, I am not sure. I have had some discussion with senior staff, and they suggest that it is often best to make some changes after the daytime hours, when managing the system processes may be easier, or expectations of meeting rules may be somewhat relaxed – ie you are doing whatever under the bureaucratic radar. That may have some truth, but the question we are looking at here is the system doing things after hours. I was to learn a bit later that there is something magical about the witching hour of midnight. The system does some sort of head/bed count at midnight, presumably for funding purposes. So perhaps there is a last minute rush to get all the changes completed prior to midnight so you can become an ‘x’ statistic rather than a ‘y’ statistic. This is a somewhat nicer explanation than my own private one, which is that the system chooses to make change at a time when a patient’s resources and powers are at low ebb, and when there is less likelihood of any interference from relatives. I would love someone to disabuse me of this…
And so to the last of the battles of this sort. Actually, I am certain it will not be the last battle, but for the purposes of this chapter it is the last.
I was admitted to hospital on the 4th December, and so my rehabilitation extended through Christmas and into January. In some ways this is not a good time to be in hospital, given lots of people understandably take time off, and there are increases in numbers of temporary staff. So the medical team disappeared for several days (at least you don’t get any more tests ordered), physiotherapy stopped for 4 days (not good), and life is a bit quiet (which can be nice). I was desperate to get some time out, in my own home, with my family. So I asked the consultant whether I could have Christmas leave and stay overnight Christmas night, coming back on Boxing Day. He saw no reason why I should not be out for a day or so, and gave me permission. We had some discussion with the occupational therapist about the home; luckily we had set things up already to be wheelchair friendly on the expectation that my ageing father might end up in a wheelchair. There’s an odd comeuppance! So we felt we could sort of manage the mechanics. The physiotherapist gave me some practice at transfers for the wheelchair to the car, and we negotiated to borrow a wheelchair and a transfer slide board for the 36 hours. My wife hired a toilet chair to sit over the loo at home. A downstairs study was converted to a bedroom that ended up very successful in terms of the height of the bed, ease of access, and ability to transfer backward and forward. We were ready to go…
“We will have to discharge you and then have you re-admitted through Admissions when you get back.” So I can’t just be on leave? “No, you can take day leave. However, if you are not here at midnight, then your bed will be marked as empty, as if you have absconded. The bed manager will have the right to put someone else into the bed.” The nurse unit manager discussed the system back and forth with me, and finished by suggesting that the odds of coming back and finding someone in my bed was probably about 10%, but there was a definite risk. I thought that was an acceptable risk. I did voice the thought that if we came back and there was someone in the bed, we could just go back home to Bribie, and do the best we could… But the reality is that when you have a catheter, and lack urine and bowel control, that would make life very difficult trying to manage the whole rehab process from home; not impossible, but spitting the dummy would not be in our best interests at this time.
So by chance, the very next day an old friend from Adelaide, whose Masters degree I had supervised about 15 years previously, came visiting, and we were joking about the constant battle against the system. She just happens to be fairly senior in terms of the system. She looked at me with a grin on her face. “Just leave it to me: I’ll fix it.” And she did, apparently. God bless her. My son helped me transfer from chair to car, drove me home, and I wept as we arrived. We had a great Christmas Day en famille, I watched some of my grandchildren open their presents, we had a superb lunch including the Brussels’ sprouts I had craved, and a real Christmas pud. I soaked up home, the Japanese garden we have built over the last two years, and the sunset over the canal. I slept about 11 hours overnight in the bed at home, we managed transfers, toileting and showering. The following day we went to a family barbecue with 18 people at a cousin’s house, driving, managing transfers, being lifted in the chair to the decking at the back of their house, and feeling overly full, and well loved, arrived back to the hospital to find the bed still there.
One funny thing... We arranged to do the transfer from car to wheelchair outside the building where I work (The Mental Health Centre), partly because of the familiarity, partly because of the access, and partly because of a nice flat surface to enable the transfer. Of course there are no Disabled car parks around the hospital, would you believe? Anyway, the Centre was empty, given it was Boxing Day; no reception staff, no people traffic. There was literally no-one in sight. There were certainly no clinics, and I imagine many of the inpatients from the upper floors had been sent home. As we arrived, we were followed up the hill closely by a grey van. As we stopped, we were challenged: “I am sorry, you can’t park here. We need access for patient transfers, and possible access for the fire brigade.” We are a transfer. I work here, have recently found my way into a wheelchair, and I am returning to hospital. We thought this would be a good quiet spot to do the transfer. “How long are you likely to be?” Well we have to go to the ward, and then my wife has to come back. 30 minutes I guess. “OK, well I guess we can trace you through your parking sticker if we have to.”
I guess they were bored and had nothing else to do. Equally they are part of a system, just doing their job, making sure that no-one gets away with anything. This is understood. But what happens if you are not able to argue the case, do not have a parking sticker on your car, or are not wearing dog-tags. You just get sent to find another place to do the transfer. We could not think of a formal place around the campus where you could safely do the transfer, and we struggled to think of a place where you could then just leave the car for 30 minutes while I was returned to the ward. I am sure someone will argue that the car park is the correct place. Is that just the system, or is it revenue driven?
Anyway one way that Jan helped our cause, and contributed to the effort to take charge, was to write a large sign on A3 paper that simply says ‘Patient Transfer’. She placed it on the dashboard in the windscreen, clever woman. Would it work? Would it be a defence of parking in an area where they might need the fire service to gain access to the building (on a bad day)? Well I guess that was all to be tested. But it felt like a small defensive move in a world full of bureaucratic battles. Luckily both Jan and I had been taught to play chess.