Disjointed

A fun day of sorts today – I had an appointment at the local rheumatology department. I have a sneaky suspicion that it’s not actually run by the NHS and is in fact an offshoot of First Great Western railway. I come to this conclusion because last year I never caught a FGW train that was on time and I’ve never had an appointment at rheumatology that started on time.

Today was no different; I was there at 9.15 for an appointment at 9.30 and actually seen at 10.40. It does give an opportunity to study what goes on.

At the entrance to the outpatient area there is a device that delivers antibacterial hand gel and a sign that says please use before entering this area. This time a few more people used it – probably motivated by the swine flu, mostly I’m the only person that touches the stuff. I guess everyone thinks it’s mindless bureaucracy but actually rheumatologists use some drugs that depress the immune system – Methotrexate for instance, so people in the patient area could be at greater risk of infection, and hand hygiene is an important protection

They always take my blood pressure and it’s always about 15 points lower than it was in cardiology. I’ve told them each time I come and they always tell me that their machine is more accurate. Is that likely? Would the hospital put a more accurate machine in rheumatology than in cardiology? Today there was a woman sitting next to me who’s been to cardiology as well. Her blood pressure is also 15 points lower in rheumatology than it is in cardiology. I told them about it again but I’d be prepared to bet nothing will have changed next time I go.

There’s another feature of sitting in that queue – the booping alarm. I call it that because I know the sound so well. I have no idea what it is but it goes off every time I’m sitting on those chairs at the end of the corridor. If you time it for several minutes you get six boops in 62 seconds, once every 10.333333333333333333 seconds, you can tell how long I’ve been listening. There is something of a contradiction in that alarm. It’s obviously important to someone, otherwise why have an alarm on it, but it’s not so important that anyone bothers to turn it off. It’s obviously like the hand gel – it matters to someone but no one knows who.

There is something about communication in that place. The last time I went the doctor I saw suggested I see the hand surgeon. OK by me, my arthritis can get me down and gradually joints in my fingers are fusing together. Sooner or later I’m going to have solid sticks protruding from my palms, so I thought seeing the hand surgeon would be a good idea. Three months later I saw him.

‘Why have you come?’ he said.

‘The rheumatologist sent me.’

‘Well there’s nothing I can do for you – the kind of arthritis you have is going to go on all around the joints even if I put in a new one.’

We did eventually agree that if my fingers go stiff pointing in a really useless direction the surgeon can at least make them move a bit and point somewhere more useful. They will still hurt.

Did I need to wait three months and spend two hour at the hospital to tell me that? The hand surgeon is sitting in the same clinic and the same desk as the rheumatologist who set me off on this unnecessary visit. Even if they can’t bring themselves to talk to each other they could stick notes on the desk. Some communication must be possible.

Would it be an awful pun about the rheumatology department to say it was disjointed? I promise I’ll get back to the novel, so long as my fingers keep pointing the right way.

Compassion

The debate about the release of Al Megrahi is fascinating. I have no idea what I would have done if I were Scottish Secretary, but I do find the different uses of the word compassion worth exploring.

All the commentators from the USA who have been given air time in the UK have said things along the lines of, ‘Where was Megrahi’s compassion when he planted the bomb that blew up the plane.’ What has that got to do with anything? Surely compassion is a one-way thing, I don’t feel compassion as a kind of swap deal. I don’t say I’ll be compassionate towards you so long as you’ve been compassionate towards me.

From a UK perspective it is often remarkable how often Americans invoke a Christian God in their support and thank him for anything good that happens to them. I have no problem with that, though sometimes it is a bit weird when all the participants in a competition think that God will be working for them and some end up as winners and others as losers. What I do find strange is that all that teaching from Christ about turning the other cheek, about compassion, seems to have passed America bye. They only seem to have read the Old Testament – all that stuff about an eye for an eye.

The issue with Megrahi is that he was a man dying a long way from home. He may also have been a man who did awful things, that’s why he was in prison. It is perfectly OK to say that his crime was so awful that no consideration should be given under any circumstances to his release; but he was sentenced under Scottish law and within that law is a provision for the relevant government officer to exercise compassion. I guess it must have been possible for the prosecution to argue that the provisions for compassion should be rescinded in Megrahi’s case and his sentence should have been life with no provision for compassion. As far as I know they didn’t do that, or if they did the judges did not accept the plea. He was not sentenced to life without compassion.

Scottish law requires the Justice secretary to consider compassionate release when asked appropriately. Megrahi had the right to make that request, based on his condition and not his crime, just as he had other rights like not to be tortured or beaten up in prison. Because Scotland is a civilised country, prisoners have those rights, as they do in many countries. If we make compassion some sort of swap deal, something to trade, something that has conditions, then we risk ceasing to be one of those civilised countries.

Fiction and Health CAre

The current debate about health care in the USA presents a difficult dilemma for someone like me with a health care background that is also trying to write fiction.

At an emotional level I would love to see the USA adopt a health system that gave coverage to the whole population. On the other hand such a system would be such a loss to the entertainment industry and fiction in general.

Take for instance the Film As Good as it Gets, starring Jack Nicholson and Helen Hunt. It is a great film that pulls apart all sorts of different layers of human emotion. Without the completely screwed up American health care system the film makes no sense at all.

Helen Hunt, in the film, has a son who has asthma; he gets poor medical care because she can’t afford to see a specialist, and has to take him the hospital emergency rooms when he has a bad attack. He has no continuity of care, no real depth of diagnosis, and we suffer with him and with her. Her ambivalent attitude to charity, in effect to Jack Nicholson offering to pay for her son to be looked after properly, is based on having acquired a set of values that believes that everyone must somehow look after themselves, even though fate deals us all a different hand.

There is another story line in which the young gay artist who lives opposite Nicholson is beaten up and then effectively bankrupted by his health care bills as he recovers from his injuries. This allows the exploration of various attitudes to art, to Gays, and so one. Altogether a great film made all the better by brilliant acting.

You simply could not make that film and base it in the UK because we all know that the story line makes no sense. Over here we all know that the NHS gives the best care that it can to everyone regardless of means, and has done for sixty years. The story of Helen Hunt’s son simply could not happen in the UK.

I’m prepared to admit that you might be able to make a story out of a scenario where what he needed was some very expensive drug, that only works now and then. You might just squeeze a story out of such a one in a million chance, because sometimes we don’t fund those because we need to make the most of the NHS funds to do more good for more people. We all know that those stories are very uncommon and didn’t really apply to us. Hard to make a whole movie out of that, though you might manage an ad for the Republican party. In the US the Helen Hunt story line could happen to virtually every waitress in the USA, that is it’s power.

The gay artist story doesn’t wash either, you might just manage some sort of plot line about prejudice against gays, we do have that over here, but the idea of being bankrupted and made homeless by health care costs is just ridiculous. It doesn’t happen in any country with a sensible system of social solidarity, and that includes the UK, most of Europe, Australasia and Canada. Fortunately for us the movie industry is mostly based in the USA and they still have these wonderful plot lines.

The American health care system leaves their citizens with shorter lives than most of Europe and condemns a significant proportion of the population to live in fear of sickness and unnecessary suffering, but hey, surely that’s a small price to pay for some great movies.

A Rag Doll Falling

I have a dilemma; I’m in the middle of editing and redrafting my current book. Do I put some of it on here as I go along? I’ve always been inspired by John Steinbeck’s Journal of a novel – it’s the notes he kept while he wrote East of Eden. According to the blurb he wrote the book in a series of notebooks, writing the novel on the right hand pages and notes to his publisher on the left hand page - Journal of a Novel, is the left hand pages.

If you know the novel then it is interesting in itself, but what I found even more dramatic was the insight it gave into John Steinbeck in action. Every day he got himself into the mood to write, sometimes talking about issues of character development or plot, but other times he was dragging an old portable air conditioner out of the basement and trying to make it work or any number of other minor tasks. The sheer stamina behind his creativity is enormous. The first time I read it I found it almost impossible to read more then a few pages without wanting to get up and DO something.

Blogging about a book as I’m writing it seems like a similar thing, but for sure my blog won’t be as inspiring as Steinbeck – well probably not.

On the other hand it seems like a fun thing to do and it might serve the same purpose – get me going, or keep me moving. Watch this space.

- Oh the book's called A Rag Doll Falling.

The Today Programme

I write this in the hope that the BBC has some cunning computer programme, or paid hack in the basement, that surveys blogs looking for any mention of their programmes.

I had to drive to Birmingham early yesterday morning so I found myself listening to the Today Programme for longer than usual. It’s worth doing now and then just to confirm that they still have their usual faults on display.

The news of the day seemed to be the announcement of Barclay’s bank’s trading results. The results were expected at ten past eight, so do we get an item telling us that – no, we get a piece telling us what the result is expected to be and we get it several times in the hour before the actual statement.

Why?

Why is it necessary to tell me what they think it is going to say before the official announcement? What is wrong with waiting till ten past eight and telling me the actual facts?

Yet again they reinforce the notion that opinion is more important than fact, that assumption is more important than evidence. It seems to be impossible to announce anything on the Today programme without first of all having some BBC pundit tell me what the announcement is going to be and what it is supposed to mean. There is a clear message that I, the listener, must be incapable of thinking for myself; that I am incapable of understanding anything without being told before-hand what it means.

The programme obviously has massive contempt for its audience. Actually that may not be misplaced; if you read the comments from people who email in, you can see that most of them are one liners from people who have already made up their mind, whatever the facts. Most of the comments are inane, I won’t quote examples because all you have to do is log into the BBC and look at comments on almost any programme on almost any day and you will see what I mean.

Whoops, there I go doing what the BBC does and telling you what to think – read some of the comments anyway, maybe I’m wrong, and you can write back to me and correct me and we could have some genuine debate.

So, end of first rant, I hate pre-announcement and pre-prejudicing of the news.

My second complaint is their lack of numeracy. They get in such a mess about very simple issues of numbers. Yesterday there was an item about reporting of child abuse – the numbers of calls to a child-line have gone up since the Baby P case. The reporter did seem to have cottoned on to one key question – have the actual numbers of child abuse cases gone up or has there been more reporting? The problem was that he seemed incapable of asking the question clearly enough. It’s a simple question – has the proportion of false alarms gone up? That’s what he was trying to say but somehow the simple word ‘proportion’ seemed to escape him.

Why might calls have gone up as a result of publicity surrounding baby P?

First of all each case might be reported more than once, could be quite likely, given that the authorities in the baby P case kept ignoring the abuse.

Second people could be more aware of the issue and report at a lower level of suspicion – again quite likely given all the blame whizzing around the media – people might report their suspicions earlier just to be on the safe side in case the shit hits the fan.

There is a third and serious possibility – abusers might be doing their abuse more often because they conclude that the authorities were so lackadaisical in the case of baby P that the chances of being caught are low.

Fourth it is possible that authorities are taking action earlier, or in less serious cases because they don’t want to end up in the newspapers.

Finally it could be that until baby P there was under reporting and that has now been corrected to some extent.

So what we need to know is how many real cases are there that have been investigated and found to be real, compared to how many have been reported; and are the cases on average more or less serious?

Why do we want to know this? Most likely because we wish to be reassured that child abuse is being dealt with effectively. The ideal result is to find that the proportion of false alarms has not risen and maybe that the seriousness of the cases has, on average dropped a bit. That would tell us that the public were being vigilant but not frivolous, and that social services were on the ball and a bit more alert than previously and it would suggest that there was not some vast reservoir of unreported cases out there that were still unreported.

Did we find that out from the Today interview – no chance - all we discovered was that there were more calls from the public to the response line and we were left with no idea as to what was really going on.

These simple questions arise whenever one looks at surveillance data of any sort. If the numbers of some event have gone up we need to know whether it is because we have got better at noticing and counting or whether there is a genuine increase. These questions arise whether we are talking about epidemics, or crime figures, or breast screening, or car accidents – the sort of stuff that is the bread and butter of the Today programme, so why can’t they have someone on it who knows how to understand this sort of data?

These two stories both say something about the Today programme and it’s mission in life. I imagine, if asked, that they would say they were seeking to inform the public, I expect there is some clause in the BBC charter to justify their existence.

It is called the Today programme and it goes out before 9am. That makes it inevitable that most of the things that may happen today have not happened yet. So what can they do? They could report in a dead-pan way what was scheduled to happen over the next 24 hours. That might be a bit boring, so they spice it up by telling us what they think will happen and what they think it might mean. It sounds OK when put like that, after all if it were boring their audience would drop and because we know it hasn’t dropped it must be OK? No, that doesn’t follow because we also have to think about what sort of society they contribute to and what it might do to us all. If they convince us that opinion matters more than facts then we end up with a society that never learns and such societies become extinct. The same thing probably happens to societies that don’t value numeracy.

If we are all doomed to live in our own opinions then nothing will get better and it’s all the fault of the Today programme.

Am I going too far in that conclusion – well I once heard John Humphreys (the doyen of the Today programme) speak at a conference – he said there were two rules in journalism first simplify, and then exaggerate. Over to you John.

The man who taught me to lie

I've been away a lot the last few weeks, so no posts. Here is something I wrote on a writing course over the last year. I'll put the rest of those pieces up as I get the chance, plus the stuff I write for our local wrting group. I sometimes envy , in a purely writing sort of way, people who've had complicated traumatic lives - they seem so interesting and it gives them so much mateial to work with. This is about the nearest I came to suffering

The Man who Taught me to lie.

When I was six I went to a new school. It was a long walk to get there but in those days small children often walked to school on their own. The first part is down hill, up hill on the way home and then a long straight road to a roundabout and a short stretch to the school drive. Not far.

The first day I was in a big class, many more children than my last school and a nice lady who was the teacher. I was eager to please and tried hard. My dad was a school teacher so I knew that school was important and that’s what you did, you paid attention and tried hard. After a few weeks, or maybe it was a term, we all took a test, the headmaster’s test. For some reason I’ve never understood the headmaster was called Mr Biggs, maybe that was his real name. In my previous school the head mistress was called Miss Thick, an interesting collection of names now I think about it.

I tried hard in the test and did so well that I was promoted into a different class, the teacher was Mr Cork. From then on nothing went right. Mr Cork espoused Fairbanks handwriting - an italic style based on the work of Alfred Fairbanks CBE. We were all issued with special pencils that had square leads in them and you had to sharpen them a special way so that you could write italic. You had to hold the pencil at exactly the right angle so that the letters had the right slant on them. It gave him the chance to make sure that you had got it wrong even when you had all the right letters in all the right order, they could still be the wrong shape. Mine always were.

There was a special place to sharpen pencils, a piece of stone at the front of the classroom with a special knife so that you could place the pencil at the right angle and cut the wood and the lead to just the right shape and then I think you had to be sure that the mess went into the correct rubbish bin. Such was the genius of Mr Cork acting in the name of Mr Fairbanks that he had turned writing from a method of communication into something approaching a religious ritual. Inevitably in a society dominated by ritual there were high priests, teacher’s pets, who could do no wrong and serfs, like me, who could do no right. It didn’t matter what you wrote, what mattered was how you wrote it.

I had no idea why he hated me; I didn’t dare tell my parents what it was like because I could find no sense in it. Every day on the walk home I had fifteen minutes to leave the mad world of slanted writing and take myself back into the sane world that my parents lived it. A world in which reading and writing was there to tell people things and learn things and be entranced by stories. In the sane world people did things, I read about adventures every night with my father, we played on the golf course behind our back garden, we played in the woods, it rained, or snowed or the sun shone. I can’t remember a single thing about school except sharpening pencils, there was no weather, there was no learning.

Each term we did Mr Biggs’ test and there was another opportunity for Mr Cork to humiliate me. I usually came in the top three in the class in those tests and often beat the high priest's of slanting writing. After the tests were were put in groups, I have no idea why. The top eight children were in group one.

‘Oh we can’t have Griffiths in group one can we, go to group two.’

Then the group leaders were appointed, the children with the best marks in each group were appointed group leader. When we came to group two I had the best marks, way better than the others because I’d already been demoted from group one.

‘Oh we can’t have Griffiths as group leader can we.’ So some other child was made group leader. This never happened to anyone else and I had no idea why it was happening to me. For some reason that I could not understand whenever I did anything wrong he didn’t just point it out, he appealed to the whole class to agree with him, and they did, or at least the high priests priests of pencil sharpening did.

And so I learned to lie. There was no way I could explain any of this to my parents, it simply didn’t make sense so I had to tell them a different story. The only thing they ever heard from the school was the result of Mr Biggs’ tests and on that score I was doing well. Two worlds, Mr Biggs’ tests, home, sunshine and snow in one and silly pencils, high priests and Mr Cork in the other. If I could lie well enough the two would never meet. I achieved almost complete separation between the two worlds in my mind. I recall there was supposed to be a school trip and each of us had to bring two shillings to pay for it. Every day we would be asked for the money and every day when I was at school I realised that I had forgotten. I never remembered; the simple task of bringing two shillings from my world at home to the alien one I lived in at school was more than I could do. The worlds were so far apart that it might have been Fairbanks Alaska. Mr Cork threatened that the whole class would not go on the trip if I did not bring the money but still I forgot. Who knows where it would have led if all these children who had paid, whose parents were expecting them to go on a trip found that they hadn’t and all because of me. Would he have talked to my parents, would some external power have questioned his methods? Who knows - another girl brought the money and forced it on my while we were sharpening pencils.

Eventually I went to another school, I took an entrance exam and did well enough to go to a renowned prep school in town. Two other boys in the class passed the exam but when it was announced Mr Cork said to the whole class

‘I’ll be glad when Griffiths leaves’ and one of the high priests said

‘So will I’

‘And so say all of us’ said Mr Cork

It was many years later that I told my father about it and the truth came out, he and Mr Cork had been at school together and dad has often beaten Mr Cork in school work and at sport. Its just as well I learned to lie and never told my father. My father was not a violent man but if he had known what was happening I think he would probably have gone and hit Mr Cork and then there would have been real trouble.

When we were eleven there were more exams, across the whole city, the eleven plus it was called. I did well and went to one of the best schools in Bristol and I remember checking up to see what happened to the high priests. They got no-where, Mr Cork had sold them short as well.

Half-baked Beans - or How crazy can we get

The Price of Life on BBC2 was fascinating. It dealt with Lenalidomide for Myeloma. Initially NICE decided that the drug was too expensive, about £47000 for each QALY saved. After the initial NICE decision the drug company Celgene offered a new deal. If the NHS will pay for the first two years of treatment then the company will pay after that if the patient survives. As a result of this seductive offer NICE has approved the drug.

If the drug does not work and the patient dies before two years are up then the NHS pays. Usually when I buy something that does not work I expect to get my money back, in other words the company pays. This deal is thus the opposite of normal commerce.

If the drug does work the company will pay after the patient has survived two years. Presumably they still expect to make a profit so how much must they be making in the first two years in order to afford to give it away after that?

There are a variety of estimates available as to how long patients might expect to live but one paper that was touted by supporters of the drug last year said 5.6 years (Abstract #0441 European Haematology Association 13^th Congress June12-15 2008 Copenhagen Denmark). So that means that when the NHS pays for 2 years the company must still expect to make a profit when it pays for another 3.6 years. Assuming that they have built in a bit of a margin for error we have to assume that at least half of the current price is profit. Isn’t that a bit steep? If they had aimed at 10% profit instead then the price would have fallen below NICE’s threshold.

If that is not bad enough, there is an even more dire possibility. Maybe the company knows that the drug doesn’t usually achieve much; in which case they can breath easy that they will make a fortune on the majority of patients who die before the two years are up, and they will pay for the occasional patient who survives against the odds.

This deal must be about the most crazy that the NHS has ever done. The NHS will pay for drugs that don’t work and the company will pay when they do. Is that how we mean to go on? In effect it encourages drug companies to make drugs that don’t work and charge ridiculous amounts for them. Surely we should have done the deal the other way around and offered to pay after two years if the drug company would pay for the first two. That way the drug company only make money if the drug really works.

One thing the TV programme does make clear is that it wasn’t NICE’s idea to do this deal, the offer was made by the company and the Government told NICE that they could not negotiate, so it was the Government who said yes to this half-baked scheme.

You might think that the secret that the drug does not save many people would come out. Think about it, the only people who will live to tell the tale are the occasional patients in which it does work. Of course those who do survive will think it is a miracle and no doubt we will see them in the media telling everyone about it. We won’t see interviews on the TV from the patients who did not survive. I suppose it could get even worse if the survivors thank the drug company for giving them their ticket to life and at the same time the relatives of those who die sue the NHS for providing them with a drug that didn’t work.

I now plan to market a new kind of baked beans, called half-baked beans, which I will say are a great cure for terminal disease. I will charge a great deal for my half-baked beans. When people take them, there are three possible outcomes: (1) they will die; (2) stay the same; or (3) live. If they die, I will say, ‘If only we had started sooner’. If they stay the same, I will say ‘Keep taking the half-baked beans’ (and paying me lots of money). Eventually all these patients will fall into groups I or 2. If they get better, I will say that the half-baked beans did the trick.

I will, of course, make the government a generous offer that I will pay for the half-baked beans for anyone who survives more than two years provided that the government pays for all the other patients.

Anyone wishing to buy shares – the usual brown paper envelope will suffice.