This is trivial and it’s also everything in the barbaric fabric of our “society”

Monday, 10. October 2011

All my life I’ve wondered exactly why one has so much trouble with “suppliers” and “services” that one is forced to buy. For me, lately, this has included garages, builders, doctors, grief counsellors, dentists, hear aid bandits, greenhouse suppliers, removals people, lawyers, accountants… the list is endless.

From all of these only two have provided what I would call good service, to whit one doctor from about twenty I have seen in the last five years and one tradesman out of about ten. My accountant is brilliant and so have been some of the countless nurses and paramedics I have encountered, though many of these have also been mediocre.

Why no Dr House style diagnosis (they get paid enough; they act like Gods); why does the final bill come in at almost double their estimate (and late; and after they failed to keep their word on any important point; and after they contracted the job out without telling you and without supervising their own subcontractor).

I used to think people just didn’t have very high standards or didn’t even go the first five yards never mind the whole nine. But now, watching our latest ever so friendly builders sizing up essential works to adapt the house and garden for my disability I have finally identified the central problems: a) none of them can communicate, even the doctors b) when they talk to you about the job they are thinking of their time, convenience, profit and have no interest in yours, and c) they don’t know the limits of their own knowledge.

This last one is the most important. Doctors make you pay by wasting your time and taking any approach they can find that atomises the situation according to safe (for them) protocols; they never think creatively like they do in the movies and on TV, never. Builders and tradesmen take on jobs they cannot time, cost or organise requiring skills they do not even have; once they have their fangs into you, their equipment on site and the clock is ticking against your at so much per man day -0 they are actually charging you for their own on the job training and their own sheer uselessness.

How else would it be, you might say. If they were Saint Steve Jobs, the patron saint of shiny plastic they wouldn’t have become builders.

I have from time to time hired minor services from people on Ecademy and in some cases I have found exactly the same thing: that some essential piece of research, design, project logistics has been overlooked and the product is therefore disappointing. You end up doing what they didn’t or couldn’t do because they didn’t care.

Most things I can do myself and when I was learning the CV business back in 1992 I often worked gratis for hours on complex careers simply to train myself and make the concepts and jargon easier for me to get right in future. I didn’t make other people pay for my shortcomings.

God, I really hope I find a way to solve this problem before I die without going postal on one of these dreadful people who do not give 100%, nor even 50% in most cases, yet always make sure that they never suffer the loss and the waste, which shows that they do know and it ain’t just a simple mistake.

The deficit never falls on them.

Being there

Tuesday, 23. August 2011

Being seriously ill is a shock-laden situation for which most of us are unprepared. Our world falls apart when we are suddenly confronted with a body that is in pain and may no longer keep the spirit alive. Usually such news comes in situations of helplessness and usually the people around us are also ill prepared to cope. Often their platitudinous mumblings make everything a whole lot worse and the professionals, good as they are, begin through procedures to discover what needs doing. It will be a long time before you are allowed to be a real person again.

In such situations the mind will usually default to denial, an interesting if ultimately useless defensive mechanism where you tell yourself that what is happening is not really happening. This is quite an achievement, if you think about it, one that demands the fading of consciousness from sharp to vague towards dream. “It’s not so bad. I’m imagining the pain. It will clear up on it’s own. The tests will show that it isn’t cancer. I am strong and nothing can harm me. I’m too young to die….” We say brave things but we also process the situation silently, half way to coma, trying to stare down the raging gale of adverse reality that has comer to tear us away from the safety of life.

Trust me, this is not the right way to go. Trust me, this will get you killed. Trust me, this is how people start to go crazy with their sickness. Trust me, this is where you lose the ability to focus on what really matters. Trust me, if you resort to denial you won’t fight back and you’re likely to die. And denial can take subtle forms, such as researching diets and alternative treatments, such as making up tosh about how being happy will save you, such as attributing causation (which is blame) to yourself for being ill in the first place, such as l;etting your well-meaning friends convince you that they know the answer. Even the doctors do not know the answer. They work with reality. They do what is possible given the discovered facts. You need to be in the same ball game as they are if you want to live.

You need to be in the place where you can feel what you feel, sense what you sense, know what you know, cry if you need to, be silent if that’s what you want, be real and maintain your own identity, the thing you are fighting for in the first place, the you that wants to live.

Nobody says this to patients. Nobody teaches them. Nobody encourages them. To avoid being lost in routine and denial, relatives and results, half truths and speculations, lost moments of unexpressed anguish that don’t go away… then you must bravely fight to remain real. And it will be against the odds. But, trust me, when your turn comes, as it will, that will be your best chance of living. I know what I’m talking about, I really do.

An information highway

Sunday, 21. August 2011

When we speak of being surrounded by information I believe we are tending to think of that in a fairly mechanistic way, possibly without expecting to understand any details, possibly as vague in our minds as we are about the mathematics that powers Google. It’s there; it’s everywhere; it is part of the fabric of our lives and our minds now. It supports us. It is rational. It is hard information, nothing vague and fluffy…

Next comes what we do with that information, another matter entirely, how much emphasis we place on which supposedly hard facts about life, which in truth are nothing of the sort because for everything that is known someone devised method of discovery and skewed the output. So that what we know to be true is actually just a form of more or less probable belief. The rest would be faith, as the religious would have it.

We are now familiar with the enterprise scenario in which thrusting people who don’t really belong in those angular clothes with those rapt expressions of passion are supposedly, in dynamic meetings, exercising their immense business and leadership skills to define, analyse, restructure, plan, implement and execute constant improvement towards a better bottom line. Whether this process can go on for ever is rarely discussed, but surely by now it is well enough advanced to wonder whether much more can be done through ruthlessly dragonish procedures, especially since everything has already been rationalised, synergised, outsourced, and Sygma-ed beyond recognition. No one sits around chewing the breeze any more, do they?

Now let me show you what rubbish this model is for the real world: please step into an acute care ward for respiratory patients. There are 18 of them in three bays and two private patients in rooms off. The nursing staff consists of at least one staff nurse and at least two other fully qualified nurses supported by at least three nursing assistants or auxiliaries. They are all working a 12 hour shift with lamentably short breaks. Also involved are one of two physios who serve this and other wards, a pharmacist ditto, the cleaning and catering team, occasional input from occupational therapy and various bods who come round doing tests, X-rays, assessments, whatever. Also on constant duty are at least two freshly qualified junior doctors working 3 day shifts as far as one can tell. And it’s visiting time so the ward is full of people, some of whom have dementia and are constantly acting up, some of whom are crying in pain and needing urgent help, some of whom need commodes and basic support and privacy, sooner rather than later. The nurses and their helpers are literally run off their feet, 12 hours a day.

The bays where the beds are were originally built for four beds but they have been adapted to cram in six, making access to powerpoints difficult at some stations and meaning that every single worker on duty is constantly cramped and harassed for space. This means that each nurse is now doing 50% more work than ten years ago with no extra pay or rights, in fact less in some cases. So you tell me how they’re yet going to save another £20 billion without cutting services…

Yet it all works and I’ll tell you how: the staff protest against the machine by speaking to the patients in their own local dialect; some of them absolutely refuse to compromise by speaking received English; they communicate with the sad old men as their wives and families would, altering their tone according to who is involved, rolling out their infinite kindness to the sickest and most demented, briskly encouraging those with hope, like me, prioritising their attention all day long, multitasking on several levels at once with rarely anything dropped.

They work by empathy; they manage all that information, all that technology, all that human drama; they managed it in an integrated way, not as separate channels like a manager might; they manage it like that because they are person centred. They do what works and they absolutely resist anything else. You cannot hurry them. You cannot panic them. You cannot distract them. You cannot disappoint them. Whatever comes up they cope with it, patiently, even if the same old man messes his sheets and needs changing ten times a day.

And even the ward sister, let’s call her Heather, gets stuck in when she can break from the damned stupid computer paperwork, finding time to comfort me when I am quietly crying because I fear that I will be a burden to Cora for the rest of my life. Heather is 69 years old and a law unto herself, as she deserves to be. And in any sensible world she would be Minster of Health. Heather doesn’t need any rat-faced little manager to tell her what to do and I doubt she’d listen if they tried.

Rehab begins

Saturday, 20. August 2011

So, here comes the rest of my life: oxygen cylinders and disabled scooters. No more plane trips. No journeys longer than two hours. Three months sleeping on my back and moving carefully while the sternum wound knits together again. Long-term dependency on inhalers and steroids to keep my airways open. Constant checking of heart rate and oxygen levels so I don’t over-use the oxygen and poison myself with CO2. Very restricted motion that probably excludes stairs for ever. Garden needs total makeover so I can use it. House needs endless bits and pieces. Loads of stuff to organise to get a Motability car and a scooter. And I’ll probably need surgery to clear a blocked artery in my leg which is causing agonising cramps.

So what? I feel fine. I love my beautiful wife and I long to be well enough to show her how much. There is nothing wrong with my heart. I can drink coffee again. I am off the poisonous heart drugs. I almost croaked in ICU but my brain is sharp and peaceful. There’s no anxiety. The worst has happened and I’m still standing. On the day I came out Cora mad me the best meal I have ever eaten: sea bass with a light jus of white wine, butter and that gorgeous unguent flat-leaf parsley they eat in Germany all the time. The steamed vegetables tasted more alive than anything I’ve ever eaten after hospital food. The new potatoes were a symphony in comfortableness. I am alive. And I have years ahead. And we can make it work. Cora read me two chapters of Adam Bede yesterday and it was inspiring.

In a world of broken dreams

Friday, 19. August 2011

If you are honestly living what you dream of then you are very fortunate indeed and have developed a rare gift. If you have hyped yourself up to believe that your life sparkles when it doesn’t really then you have reached an advanced level of self-deception with which you are also deceiving everyone else. If you have reached some eastern contemplative state where all reality seems the same to you thenbon chance but please do something useful with it…

If you are marking time while dreaming your dreams and worriting daily about how to fulfil them then you are firmly in the vast majority of the population. Whether the things you dream of are possible or delusional isn’t really the question. What matters is that you have your life invested in an existence other than the one you are actually living.

When this applies to acute concentrations of people, say youth in our inner cities, it can become, as we have recently seen, a dangerous and unstable situation. All those young people were innocent children once who could have been gently but firmly guided towards contributory participation in our world. What actually happened is that no adult had the skill, the courage or the decency to intervene in their lives and so they were left as the psychic victims of consumerism: advertising; bling; the arrogant strutting of popular culture; the nasty back-biting that takes place all day on television, hideous video games, and then the far more dangerous impact on the ground of drug culture and gangs.

Result: madness, mayhem, chaos, tension seeking release, the intoxicating power of being a destructive force who can’t share the house and so will damn well tear it down. Then they’ll take you seriously.

It isn’t just them, however. It’s almost all of us. During my spell of hospitalisation I’ve been studying the people taking care of us and I’ve got some case histories to share with you, three of them:

1) Female ambulance driver, aged 41: lives alone but close to parents; wants to be a speech therapist but rejected for the degree course; could read when she was 4 and served as teacher’s assistant aged 7 at rural school; suffered some kind of ill health (too painful to talk about) in her twenties and became an ambulance driver on the promise (now withdrawn by the NHS) that there was a career path through to Paramedic (now degree intake only). Has passed the degree access course with distinction but told that she lacked suitable experience. Steve’s career diagnosis: no one has ever taught her how to apply for a degree course and so the middle class kids who have been coached will always get her place; told her to identify and start reading key course books and arrange weekly voluntary work to beef up her next application. Hope she makes it.

2) Male nursing auxiliary, aged 44, Nigerian, married with 3 kids; wonderful, dignified, giant of a man who worked 20+ years at TCN level for a Danish shipping co in Nigeria and stupidly left his job to come to the UK for a postgraduate course in advanced logistics. Can’t get back and onto a full expat package because of institutional racism in the shipping industry. Stranded in the UK and desperate to get home. Knows he made a terrible mistake. Steve’s advice: write extremely cunning CV and letter to target competitors of former employers, hinting that his knowledge of their secrets will bring commercial advantages to a new employer; negotiate moderate step towards full package instead of demanding the works. Return home to family property and contacts. Hopefully, in happiness.

3) Female catering assistant, aged 26, LWP who is training in social work; utterly charming girl who laughs off the everyday trials and tribulations of serving barely edible food to people with dementia and terrible physical illnesses all day long for just £7.30 an hour. Not highly qualified and not even ambitious. Just “likes to see people smile” and would be glad to work in care with old people if she could get a qualification. Luckily she can, after her boyfriend gets a good enough job to sustain the two of them. Because at the moment they barely have enough to survive on.

Three examples among scores that I encountered, starting with some would-be singers and writers working in intensive care, flowing past all the women hoping to escape into a good marriage or motherhood, coalescing around the older people, in their forties, mostly women, wanting more from life than bedpans and blood tests, night shifts and whatever…

One solution would be to make their work nicer. To take out the capitalist concept of them as merely labour input, get them off compulsory 12 hour shifts and compulsory night shifts, give them a clear career path with incremental salary increases and decent pension rights. Change the terms and conditions to reduce paperwork and stress. Give them more support in specialising and training for it. Invent a way to favour and promote the talented, which really doesn’t exist at the moment.

These people are as far away from looting and rioting as it is possible to be. Their levels of empathy, commitment, love, dedication, are outstanding (though they could and should be sharper on the job and that’s where promoting talent would help). Yet almost all of them feel exploited and they yearn for holidays. They long to be able to express their own personalities through their work. They are people, people that we depend upon, and instead of making up idiotic theories about the macro aspects of healthcare we should have the wit to design systems that nurture their amazingly valuable contributions. If they walked out, if they became disaffected, the whole culture would smash to pieces.


Friday, 19. August 2011

Starting life again, from a place I never expected.

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