Wednesday, 18 May 2016

Brussels and Babel

Well, 'I ha'e me doots,' (as someone used to say, meaning I have my doubts). My son who knows about these things tells me I don't need to and that my grasp of the referendum debate is ill-informed. No, he's not that severe on his old dad. But he thinks I'm wrong, as do most of my family.

As I told him last night my reservations are not to do with the economic arguments or the security ones or even to do with migration, since it seems that like statistics they can used on either side to prove a hypothetical case. 'If we leave, we'll be cut off from our largest trading market, and the EU will be so cross with us they will extort a swingeing price from us.' Or, 'If we stay, we'll have to keep open borders to the ever-increasing population of the expanding EU and be "flooded" with immigrants, taking lower paid jobs, making demands on our services etc etc.' I guess that we won't sink or swim whether in or out. I'm certain that no one can predict our future either in or out in 2020, 2030 or 2040, and it's a foolish man who pretends to. 

So wherein do my doubts lie? I think it's to do with concentration of power. The well-known episode of ancient near-eastern 'protohistory' serves as a powerful myth illustrating the point. 
Pieter Breughel, Tower of Babel

'Now the whole earth had one language and the same words. And as people migrated from the east, they found a plain in the land of Shinar and settled there. And they said to one another, “Come, let us make bricks, and burn them thoroughly.” And they had brick for stone, and bitumen for mortar. Then they said, “Come, let us build ourselves a city and a tower with its top in the heavens, and let us make a name for ourselves, lest we be dispersed over the face of the whole earth.” And the LORD came down to see the city and the tower, which the children of man had built. And the LORD said, “Behold, they are one people, and they have all one language, and this is only the beginning of what they will do. And nothing that they propose to do will now be impossible for them. Come, let us go down and there confuse their language, so that they may not understand one another’s speech.” So the LORD dispersed them from there over the face of all the earth, and they left off building the city. Therefore its name was called Babel, because there the LORD confused the language of all the earth. And from there the LORD dispersed them over the face of all the earth.'
European Parliament Building, Strasbourg

It is not immediately obvious what the LORD's problem is with the tower-building. After all, this human cooperation has limitless possibilities. But that is, I suspect the problem. Humans being as they are, this monolithic community has limitless potential for evil, which is something that history bears out whether it's a Roman empire, a union of soviet states, or the numerous attempts to establish empires through the ages. When a state becomes too large, the misuse of power increases. A diversity of communities with shared languages and cultures limits the potential of a single super-state. Don't mistake me. I'm not say that the EU is such a super-state, but with continued accretions and centralised institutions it runs the risk of establishing the infrastructure for one. That danger is one I am wary of. 

Separate nation-states, defended by treaties, connected by agreements, seem to me to provide a safer and more interesting world in which to live. Europeanisation is no more attractive than a world state. For my readers who are too young to remember that far back, I came across this summary of our involvement with what is now the European Union written by a friend's brother on Facebook. (By the way, I am impatient with the lazy shorthand of 'staying in' or 'getting out of Europe'. It is of course true that whatever happens we will remain a part of Europe. It's a geographical fact.)

'Regardless of individual circumstances today, the organisation Britain voted to join back in the 1970s was a good one: a Common Market, a union of individual states each with a desire to assist its partner in a friendly economic future that would progress towards a common economic policy. BUT the EU today has and continues to metamorphose into something very different! An unwieldy unholy leviathan where individual states, cultures and societies are subject to the singular authority of an impossible political union at any cost.' The writer then becomes increasingly polemical, but he has a point. 'Hence the Euro has only highlighted the diversity and incapacity of various nations to trade on an equal footing. What the future of Greece and Spain and Italy or even France will be against Germany is a very dark cloud that still looms over the continent! The complete breakdown of the EU in being able to deal with crisis such as migration through individual states and the EU's resolve to combat military threats such as in the Baltic states or the Ukraine is alarming! In effect the entire edifice of a European Union, a political union which is today the central desire of bureaucrats within the Closeted European state, is in danger of utter collapse! The question should be if we stay in this power what will our future be when we can see no future in this monstrous state! To vote to remain within this organisation can only delay the inevitable of a complete breakdown in society and our eventual withdrawal at an even greater cost! In view of this overriding National and Cultural concern we can only properly vote for an exit because it will be beyond stupid to continue along the spiral of destruction that the EU is set upon. Alas, many have short memories and are taken in by Cameron and his brigade of sycophants who led by selfish desires are prepared to sell this land down the toilet' (Paul Daly).

It is certainly true that the EU is far from the Common Market, and it is naïve to believe that we could reform it from inside, changing it back from a leviathan into a mackerel. The argument that we have influence from inside is hardly evidenced from our recent voting success in European institutions. Perhaps starting again would be worth it. So overall, I ha'e me doots. Maybe, Ernst F Schumacher was right, 'Small is beautiful.' 

PS Having searched European Parliament building on google, I see I'm by no means the first to connect the EU with Babel, but I can only ask you to believe that I had not come across it before.

Wednesday, 30 March 2016

Don't screen us out

There are so many things on my mind at the moment, from academy schools and benefits to the simple joys of spring. There was a very good programme just over a week ago on the BBC called The Battle for Christianity, presented by Professor James Beckford, who pointed out the frequently proclaimed demise of faith in this country has been greatly exaggerated. A very informative programme.

However, that's not first on my mind. I recently saw a title I liked, "From Conception to Completion", which to my mind means that we should be concerned about life from its beginning to its end. This post is concerned about its beginnings. I wrote to my MP on 18th March:
Dear Ed

Monday is World Down's Syndrome Day, I gather, so I hope you won't mind my writing to you on a matter of personal interest to me.

My goddaughter's (now in her 40s) older sister was born with Down's Syndrome and is still living a fulfilled life.  Much, I'm sure, is due to the care and hard work that her parents devoted to her in her early years.  In my view and in theirs it would have been tragic if she had been screened out before birth.  Ultimately she has enriched their lives.  I think there is a real danger in pursuing the trend to eliminate prenatally any babies who do not conform to our standard view of what is "healthy".  I suspect it was this sort of policy that led to the dangerous rise of eugenics pre-war.

The UK National Screening Committee (UKNSC) has recommended that a new technique, 'cell free DNA' (cfDNA), is implemented into the country's Fetal Anomaly Screening Programme (FASP). This is an antenatal  programme by which pregnant women are given tests to detect whether their unborn babies are disabled through initial blood tests, and on the basis of the probability these give, the choice of more invasive prenatal diagnostic (IPD) tests.

IPDs carry a risk of miscarriage and a small minority of women do miscarry due to them. The cfDNA technique meanwhile, is a non-invasive prenatal test (NIPT) that works by genetically analysing fetal cells in the mother's blood for signs of fetal anomalies. The UKNSC believes that introducing cfDNA as a secondary test, would reduce the numbers of women that go onto IPDs, and thereby reduce the miscarriages that are caused by them.

A pilot study that the UKNSC themselves commissioned, however, concluded that if implemented, cfDNA would lead to 102 more Down's babies being detected every year.

The latest figures ( tell us that 90% of babies who are prenatally diagnosed with Down's syndrome are aborted. Much of this is due to the pressure that parents feel to abort their baby due to some bias in the system, and the profound lack of information or support offered to them. If then, as the UKNSC pilot study predicted, 102 more babies with Down's syndrome would be detected due to cfDNA implementation, 92 of these would be aborted. Based on the most recent figures for Down syndrome births (2013), this would mean a decline of 13% reported live births of babies with Down's syndrome.

This would have a profound long-term effect on the population of people with Down's syndrome in the community and enable a kind of informal eugenics in which people with certain kinds of disabilities are effectively 'screened out' of the UK population before they are even born. Implementing cfDNA at this stage would effectively mean introducing a worsened form of informal eugenics into our culture than already exists.

Would you please consider talking to Jeremy Hunt MP, asking him to halt cfDNA implementation and provide medical reforms that will bring support to people with Down syndrome  and their families and alleviate the discrimination that they commonly experiences.

If would like to read more on this, please visit the campaign site

Thank you.

Yours sincerely

Down's syndrome children face extinction

confess that the meat of this letter was borrowed from the admirable Don't Screen us out charity, but it is something about which I feel strongly, as I believe many people with disabilities do. They see the tendency by "normal" people and politicians to view their lives as not worth living, and therefore better to eliminate before birth. Whereas I, having lived an active "normal" life before my MND, understand now in a way I hadn't fully seen before that living with disability or "abnormality" is by no means an inferior sort of existence. Indeed only yesterday I received an email from a fellow MND patient who said that she felt she was a "stronger and better person" now. Too easily do those who pass laws for us assume that they know the answer; too often, I fear, they are led by economic convenience rather than by human understanding.

We should not forget that the Nazi pogroms had their roots in apparently benign eugenics.

Anyway I had a reply from Mr Vaizey - which contained, to be honest, pretty much what I had expected, the standard government-speak statement.
Dear Michael,

Thank you for contacting me about non-invasive prenatal testing (NIPT).

I understand your concerns and I recognise that with the correct help and support, most people with Down’s syndrome are able to lead healthy, active and more independent lives.

The NHS Fetal Anomaly Screening Programme (FASP) in England offers women choice in pregnancy. Screening is described as an option, not an inevitable aspect of routine antenatal care. The screening programme is careful to explain that choosing not to have the test is a valid option for a woman. Women are invited to make an informed choice based on their own values and beliefs about whether to participate, and regarding options following receiving their results.

The UK National Screening Committee (UK NSC) advises Ministers and the NHS in all four countries about all aspects of screening policy. In January 2016, the UK NSC announced its recommendation that screening for Down’s syndrome using non-invasive prenatal testing (NIPT) be introduced as an additional test into the FASP, as part of an evaluation. This follows a full review of the published scientific and cost evidence relating to NIPT, following combined testing. A copy of the UK NSC’s review is available at

Ministers welcome the UK NSC’s important recommendation on NIPT which has the potential to transform antenatal care. I know that the Government is currently considering whether this could be introduced as part of the NHS FASP.

Thank you again for taking the time to contact me.

Yours sincerely,

To give him his due, as well as being a minister of state, Ed Vaizey is a good constituency MP, and I believe he does give such ethical matters his serious attention. 

I just hope that we never reach a brave new world of standard model human beings.

Monday, 29 February 2016

Coming home to roost

If, as a habit, you denigrate a particular caste, or class, or profession, especially if you are a government, you ought not to be surprised when that profession, or class, or caste deserts you.

So if you tell people who are unable to find paid employment, such as the disabled, that they are shirkers, not workers, don't be too surprised that they are less than impressed.

Last week, Sir Michael Wilshaw, chief inspector of Ofsted, told us that in a year more teachers were going abroad than are being trained as graduates. There is such a "brain drain" in the profession that he was urging politicians to impose "golden handcuffs" on newly trained teachers to prevent them leaving for more lucrative positions in the burgeoning industry of private (public) school offshoots abroad. Of course the very concept of handcuffs at the bottom end of the employment ladder is indicative of the regard in which teachers are held. They would be less golden handcuffs than iron shackles - the gold lies abroad. I suspect most teachers would not mind their profession being regarded as serving their pupils, but handcuffs are more redolent of slavery or crime.
Photo: Association of Teachers & Lecturers

I doubt that it is so much a matter of pay levels that lures our highly trained, able young teachers overseas, but the constant low regard in which they are transparently held by our government. The curriculum is so closely prescribed that there is no room for creativity in the classroom. There is such a lack of trust that inspections focus in on the extensive record-keeping which consumes so much of teachers' time and energies. The low regard is of course reflected in pay. There are other countries such as Germany and Holland where pay reflects higher regard. An informative article in the Guardian shows how far down the comparative table the UK comes. The first and major step the government should take to stem the flow of teachers abroad would be to stop denigrating (or "dissing") the profession and to begin showing appreciation for it (or "bigging it up").

Incidentally, I see that Nicky Morgan, the Secretary of State, is considering importing someone from America to replace Sir Michael when he retires. A fairly eloquent indication of her low regard for our home-grown educational talent.

Talking of importing from abroad, today's news announced that 69% of NHS trusts are actively trying to recruit staff from overseas. 23,443 nurses' and 6,207 doctors' posts are vacant (BBC News) in England, Wales and Northern Ireland. It's true, apparently, that the NHS is employing more staff than ever, but unfortunately the demand is bigger than ever. However if you treat highly trained and intelligent men and women as obdurate bolshies, and demand they do more and more with less and less resources, you have fundamentally undermined their respect and their working conditions. No wonder so many leave the service or find employment where they are more highly valued, better resourced and better remunerated. I know one senior doctor who has crossed the border for that very reason.
Photo: British Medical Association

There are two pernicious effects of this shortage. One is the inevitable resort to agency staffing to plug the gaps - which is of course more expensive than in-house staffing as well as less effective since it militates against creating teams who work together. The second, which is sometimes linked to the first, is the effect of denuding needy nations of medical expertise, of which, bluntly, their need is far greater than ours. Salaries here will always be attractive to those in developing countries. And so we have the grotesque spectacle of our government excluding asylum seekers while at the same time encouraging by their policies an exodus of essential skills from impoverished nations. In my view it fails the test of morality.

It was the good book, I seem to remember, that said, "You reap what you sow." Well, we've sown lack of respect for teachers and many seem to want to find more rewarding environments. We've sown antagonism and mistrust for the medical profession and many look for where their expertise is truly appreciated - and we are all the losers. Let's have less rubbishing, and more honouring, of the women and men on whom our essential services rely. Try it and you'll be surprised at how things change.

Wednesday, 10 February 2016

Why "How to die?" - my question

I see I'm quoted in the Daily Mail today. Quite fairly I'm glad to say, although I don't think of myself as a "campaigner". Just someone with an insidious and very slow type of MND who is quite concerned about how little coverage good and natural dying receives in the media - of whom the BBC is just one example. And it matters because the media does a lot to shape public opinion, including in the area of suicide - which is of course the subject of tonight's BBC documentary, "How to die - Simon's choice". I shan't be watching tonight - but I might catch up tomorrow. Maybe the Mail's article tells me enough, including that Simon Binner's widow, Debbie, would have preferred him not to have gone to Switzerland. "I would have preferred him not to go,’ she admits. ‘There is a beauty in caring for someone who is dying. I loved Simon. I would have loved to nurse and cherish him to the end." What an amazing woman! 

In 2000 the World Health Organisation issued guidelines about the way the media should treat the matter of suicide. Near the beginning, there's a section headed: "IMPACT OF MEDIA REPORTING ON SUICIDE
"One of the earliest known associations between the media and suicide arose from Goethe’s novel Die Leiden des jungen Werther (The Sorrows of Young Werther), published in 1774. In that work the hero shoots himself after an ill-fated love, and shortly after its publication there were many reports of young men using the same method to commit suicide. This resulted in a ban of the book in several places (1). Hence the term “Werther effect”, used in the technical literature to designate imitation (or copycat) suicides.
"Other studies of the media’s role in suicide include a review going back to the last century in the United States (2). Another famous and recent case concerns the book Final Exit written by Derek Humphry: after the publication of this book, there was an increase in suicides in New York using the methods described (3). The publication of Suicide, mode d’emploi in France also led to an increase in the number of suicides (4). According to Philips and colleagues (5), the degree of publicity given to a suicide story is directly correlated with the number of subsequent suicides. Cases of suicide involving celebrities have had a particularly strong impact (6).
"Television also influences suicidal behaviour. Philips (7) showed an increase in suicide up to 10 days after television news reports of cases of suicide. As in the printed media, highly publicized stories that appear in multiple programmes on multiple channels seem to carry the greatest impact - all the more so if they involve celebrities. However, there are conflicting reports about the impact of fictional programmes: some show no effect, while others cause an increase in suicidal behaviour (8).
"The association between stage plays or music and suicidal behaviour has been poorly investigated and remains mainly anecdotal....
"Nevertheless, there is always the possibility that publicity about suicide might make the idea of suicide seem “normal”. Repeated and continual coverage of suicide tends to induce and promote suicidal preoccupations, particularly among adolescents and young adults."

The normalisation of suicide as a remedy for chronic and terminal illness, or disability, is the reason last November I wrote to Lord Hall, the BBC's Director General. Here's my letter, followed by the delayed reply from one of his underlings.

26th November 2015
Dear Lord Hall

I am writing to you on a matter of personal concern to me as I have a chronic and life-limiting disease.
You were quoted two days ago as saying that the next charter should not be an attempt to tell the BBC what programmes it could or could not make.  Whilst I agree with that aim completely in principle, it is most important that the Corporation also maintains its commitment to editorial impartiality in all its output, especially in news.  To that end it needs to be accountable, ultimately to those who pay for it through their representatives.
My particular concern is to do with the Corporation’s treatment of end-of-life issues.  Although generally your news outlets make an effort to represent opposing views when the subject is debated, there seems to me a consistent disposition to focus nationally on stories of people ending their own lives (travelling to Dignitas etc) rather than on the many more who choose a natural death and the work of hospices, palliative care doctors and nurses.  I do of course realise that news consists of the exceptional.  Nevertheless, the media both reflect public opinion and mould public perception.
My wife woke up recently to hear an account of a ‘beautiful’ death at Dignitas.  A few weeks before, Victoria Derbyshire did a feature on a man who had announced his imminent death there.  I was in touch with the planning producer at the time who wrote to me.  ‘I will certainly talk to my editor about your suggestion of covering good end of life care on our programme – as I think that would definitely be a very interesting and important issue to cover.’   I have only praise for that producer who was more than helpful.
What concerns me is that inevitably in an organisation as large as the BBC there is a danger of an editorial orthodoxy which ironically discourages diversity of viewpoint in its creative output.  There are many inspiring stories of surviving against the odds and of good natural dying out there, which are newsworthy, and yet we see and hear precious few of them, it seems to me.
The media affect the mood and culture of our society.  To focus on stories of death can induce an atmosphere of fear and hopelessness in the audience.  Whatever is in the next charter, I hope it will keep in place some sort of independent oversight in order to ensure negative and positive are balanced in your output. 
Yours sincerely
Michael Wenham
Lord Hall of Birkenhead
London W1A 1AA

cc         Rona Fairhead, BBC Trust
            Ed Vaizey MP
            The Rt Hon John Whittingdale

As the BBC might themselves put it, Lord Hall declined to reply but the corporation did issue a statement. A bland and predictable response, sadly. It remains to be seen whether we see any more positive programmes to encourage those of us with incurable disabling conditions that there is an alternative to topping ourselves.  

Sunday, 10 January 2016

The sincerity of computers

"Dear Mr Wenham,..." (sic) So begins an undated letter to me about renewing my blue badge, or as the letter prefers, my Blue Badge. Its ending has been puzzling me.
"Yours sincerely
 Oxfordshire County Council" (sic).

Can a county council really be sincere, I wonder, writing to me about my old blue badge, telling me to cut it up and post it back to them? I suspect not. When I was first eligible for a blue badge, I received a letter from a polite young, I imagine, lady, whose name I still recall. She could be and, I'm sure, was sincere. However, there's no longer any name anywhere in sight on the letter. So what am I to conclude?

My conclusion, as a former RSA Basic Clerical Skills moderator, is this: that the polite and literate Ms Cundy has been replaced by semi-literate automated computer software. Clearly the letter is generated from a database (possibly programmed by the said Ms Cundy before her removal). And some oaf has created a standard letter format with inconsistencies of punctuation (decide whether you will use commas or not in the address and signing-zoff lines) and the most inappropriate of signing-off phrases.

So now, I receive a letter from a machine which tells me it is sincere. Harrumph! In the words of Victor Meldrew, I don't believe it. What next? xxx at the bottom? A series of emoticons? Leave out the pretence at sincerity, please. That would be at least honest. Or how about employing another young person who needs a job?

Thursday, 31 December 2015

The wedge's end

Today I had the last appointment of the year with a nice nurse at our GP practice - and now I can hear! I've spent the festive season in a cloud of unhearing because of wax in my right ear. It's been a good experience, in a way, in increasing my empathy with the many who are "hard of hearing". It's extraordinary how stereophonic hearing enables one to pick out conversation against background chatter. It was hard for our guests, however, as Jane tells me my speech was more garbled than normal! (Correction: it was affected.)

So I'm very grateful to Holly and my practice who still provide this service. It's not complicated of course. Just a matter of lubricating the lughole with olive oil for a week and then a visit to the professional to flush it out in five minutes. All free on the NHS. Apparently, however, in many places this simple procedure is not funded anymore. I'm told that to get your ears syringed in Oxford would cost you £70-80 - unless of course you go to A&E and have three-month wait.... And what about that other common condition, varicose veins? Oh no, you can't get them dealt with on the NHS anymore. Wait until they're open and weeping, and then we'll do them. Otherwise go private and pay £1000.

So much for the £ billions for the NHS the government trumpets so loudly! (By the way, have you noticed that their stock response to any awkward question is not to answer it but to spout some large monetary figure which is meant to impress us? And naturally it sounds impressive to us ordinary tax-paying mortals, not being among the 1,826 billionaires in the world [i.e. with wealth of over $1000 million].)

So much for the founding principle of giving treatment free at the point of use! Yes, I know it's already been eroded at the edges, with prescription charges, dental charges, road accident charges and so on. And we already see the negative effects, with people self-medicating and neglecting their dental care until it's too late. But it is clear that, whether by intention or not, the effect of government policies is to shrink further free NHS treatment.

Which leaves one perplexing question to answer. What is happening to the £ billions allegedly being poured into our National Health Service? Is it being spent on hugely expensive experimental operations, or drug regimes with hugely costly pharmaceuticals? Or on paying the interest on the legacy of foolish public/private partnership initiatives? Or on administrators called in to sort out yet more doctrinaire reorganisation? Or prodigally buying in agency staff because we don't pay those we have the wage they deserve? Or is it simply because cantankerous old crocks like me are surviving too long and costing too much?
Thank you from the choir
One encouraging piece of news on Christmas Eve concerned the number one selling song in the Christmas charts. Here's what two of the Greenwich and Lewisham NHS choir had to say about the news that they had topped the charts; they're a physio and a doctor: Thank you from the choir. I think they're right, that their popularity reflected how much the NHS and NHS staff are appreciated and loved. The NHS is one of the best things about this country.

The NHS Choir sings "A Bridge over you"
And here's the song itself - which even cantankerous old crocks can enjoy: The NHS Choir sings "A Bridge over you" The choir's aim was to support the hard work done by doctors, nurses, midwives and many others in the NHS, with proceeds set to be donated to a selection of charities including Carers UK and mental health charity Mind. 

At the end of 2015, I'm going to say a huge thank you to everyone in the NHS. I know you're in it for the last of those three initials - and you ought to know that 99.9% of us appreciate the long hours you work and the awesome skill and care you show us. 

Finally, looking forward to 2016, I hope and trust that the wedge will not be pushed in any further, and that the government will give you the recognition and reward you totally deserve. Happy New Year.

Sunday, 6 December 2015

1st National PLS Study Day

 Photo: Tripadvisor
There are a handful of us in Oxfordshire who have Primary Lateral Sclerosis, the slowest and rarest type of MND, and, I suppose, there's an equally sparse distribution nationwide. In fact its pathology, the way it develops, is so unusual that the experts aren’t agreed on whether it is truly a type of MND or an entirely separate condition. Anyway, that means that it is a Cinderella of MND research. In Oxford we are lucky to have a concentration of MND expertise, that PLS is not neglected, and is a hub for understanding the condition. I believe the idea of PLS Study Day originated with Professor Martin Turner; it was certainly organised by the Oxford MND Centre.

So on Friday 23rd October about 120 of us – professionals, researchers, carers and people with PLS – gathered at the Oxford Spires Four Pillars Hotel on the Abingdon Road, to hear mercifully short presentations from our home team and from some “away” experts. “Mercifully” – not because they were boring, far from it, but because my attention span is limited. We heard about the characteristics of PLS – that was reassuring as I learned I wasn’t such a freak after all, but rather my symptoms and the way they progressed were pretty characteristic; we heard about what MRI and MEG scanning showed up, and a bit about genetics. What was most obvious was that a lot of very sharp minds were focused on the condition.

After a rather good lunch and the keynote lecture given by Dr Mary-Kay Floeter, the world’s leading specialist in PLS, based in Maryland, USA, which was brilliant, the focus switched from research to management, and again the home team led in this. It was informative, practical and helpful. All was well until Rachael Marsden, the Centre Coordinator, talked about a new smart phone app called Sex Diary, of which she showed a discreetly blank screen. As is the way with PLS, the collective risible nerve was tickled and only with difficulty pacified. Both the morning and afternoon sessions ended with patients’ questions answered by a panel of the experts.
It was an exceedingly good day, not least because of the opportunity to meet many others with the same condition with similar but different stories to tell. As we all know it helps to know that you’re not alone; and it helped to have explained what’s happening inside us. It was also brilliant to discover how many people are interested enough to devote their lives to studying the disease and to caring for us.