Pluses and minuses both sides of the Atlantic

What a strange weekend! I suppose my highlight was Valteri Bottas coming third for Williams in the Canadian Grand Prix - the first podium position for our local Formula One team this season. I know the circuit particularly suits Williams' cars, but he was beaten only by a Mercedes (Hamilton) and a Ferrari (Vettel), and at least one of those uses the flexible wing of dubious legality.

And then on the plus side also, my mother-in-law who's staying with us enjoyed watching her near contemporary's birthday celebrations on television. That was a jolly occasion, I must say, especially when the sun came out for the party in the Mall. The extravagant trappings of our monarchy excite me towards republicanism, as does the structure of establishment that adheres itself to it. However I have great admiration for the lady herself; and I wonder whether her successors can measure up to her. And I do see the potential snags of an elected presidency - not least in the light of the two apparent contenders in the US. Personally I reckon that we could settle up our national debt by selling off much of the monarchical surplus stuff (houses, jewellery etc) and happily have something more like a Low Countries or Scandinavian monarchy. That might limit the propensity of politicians to exploit royalty and the British sentimental love of pomp, pageantry and pretty things... Just saying!

But seriously,...

Outweighing all that, on the dark side, were the events at Orlando and Marseille.

I first discovered the events at the Pulse nightclub in Florida on Facebook. Omar Mateen, American-born 29-year old, shot 49 people dead and wounded 53 in the deadliest mass shooting in the US in the gay club, where people were enjoying a Latin music evening in what they imagined to a "safe" place. President Obama "said on Sunday the Orlando gunman's motivation was still unclear. 'We know enough to say this was an act of terror, an act of hate,' he told reporters." It sounds to me that it was first a plain act of homophobia, then dressed up or "justified" in the name of radical Islam - not that there can ever be a justification for such barbaric butchery. 

Meanwhile we were hearing commentary about the violence between English and Russian fans at the end of the draw in England's first match in EUFA 2016 in Marseille. Strangely in my view blame on the BBC seems to have been pinned on the EUFA authorities (scheduling the match late in the day), on the availability of drink near the ground, on the French (heavy-handed policing) and on the Russians (specially trained thugs) - but not on English football "fans" lacking in self-control. I do notice a tendency, which I suspect stems from the government, to paint Russia as the villain in every possible scenario: the villains in Ukraine (Who provoked the resistance to the elected government?), in Syria (Who encouraged the uprising against President Assad despite warnings?), in sport (Were they alone in hiding drug-taking in their sportsmen?). It is of course convenient to create a bogey-man of another state. It allows politicians to damn any project they dislike as being favoured by President Putin. Maybe it's not surprising then that English football supporters consider it open season to beat up the pesky Russians.

Vladimir Putin Photo BBC

The latest example of this has been the oft-repeated assertion of the Remain campaign (Philip Hammond, Michael Fallon, Jack Straw and even the hand-shaking David Cameron) that Russia and particularly President Putin himself are in favour of Brexit. The odd thing is that the Kremlin has been assiduously (and infuriatingly) silent on our EU referendum. This morning I heard a Russian spokeswoman quoted in exasperation saying "the West tries to blame us for everything".

Mary Dejevsky Photo Newsweek

To find out the truth I sought out an article by the most reliable commentator on Russia I know, Mary Dejevsky, and found a careful short article in the Financial Times of 2nd June headed, "Vladimir Putin is not ready to toast Brexit". Interesting, I thought. She argues that Russia is in fact most concerned to have stability on its borders, and anything that might contribute to the EU's break-up would be anathema to Mr Putin, whose priority is the nation's security. This is its last paragraph, "The Kremlin has given no hint of any preference. If you chance upon a Russian diplomat in a quiet corner you might find, if not outright hostility to Brexit, then profound misgivings. Which is why, although the western consensus is that Mr Putin is preparing to toast an Out win, do not be so sure. The champagne may indeed be on ice. Whether it is in anticipation of a UK vote to leave the EU is another matter."

I on the other hand am now prepared to declare my voting intentions for 23rd June! I have moved, reluctantly, like Dr Sarah Wollaston, a Tory MP I greatly admire, from Brexit to Remain. I admit to being surprised to find myself on the same side as David Cameron and George Osborne, a power nexus I fundamentally dislike, and very sad not to be on the same side as the straight-talking Michael Gove, Dennis (the Beast of Bolsover) Skinner and Jacob (the Pinstriped Policeman) Rees-Mogg. It came to pass last week. 

I decided to consult my family. It struck me that the decision we're about to make will affect them and their generation much more profoundly and for longer than me and mine. So I contacted them all - seven of them - and asked them if they would mind telling me what they thought about it. Unanimously and without collusion they came back with the same answer in different forms and for different reasons. The reasons were good ones, a mixture of head and heart. To mention but four: collaboration is preferable to competition; the EU institutions mitigate the worst excesses of concentrated power, like that UK and other governments can wield; major problems, such as climate change and economic inequality, can best/only be solved by cooperation; the leave campaign is fuelled by an ugly "anti-immigration, scary foreigners" brand of thinking. Well, it's their future, and I'm not inclined to stand in their way. As I've said before, I don't give much weight to the silly sloganising and soothsaying ping-pong of the politicians and the experts they drag in to support their sides. But I do respect my children's and their partners' views, which are far from silly. So unexpectedly I shall vote to remain in the EU, with the expectation and devout hope that the United Kingdom will at last again actively engage in reforming and reshaping it for the better - which I believe it desperately needs.

Not, of course, that I expect this to make an ounce of difference to my readers! 

PS And now that The Sun, that paragon of moderation and reason, has muscled in on the side of Brexit, I feel confirmed in my decision.

Losing your voice

Referendum campaigners suddenly woke up to the fact that many, particular young, people are feeling unheard and disempowered. So last night as the deadline for registering to vote approached the registration website crashed and kept crashing. I heard someone relating how this supposedly two-minute process took them three minutes to complete the first page and then it crashed and continued to do the same thing. I wouldn't be surprised if they'd given up. One might argue that they shouldn't have left it to the last moment. But such is human nature - well, for a lot of us. I must admit to being someone who's worked better to deadlines. Which reminds me, I have an article I must send in this week! It is a shame, however, when people lose their voice needlessly, when what they want to say isn't heard. It's even worse when it happens by force.

In Motor Neurone Disease (or Lou Gehrig's) most people soon lose their voice - literally. Jozanne Moss, my South African co-author in I Choose Everything, described how she wanted to forestall this for her young children. When she and her husband Dave were taking a break together, she recorded DVDs for them which they could play in years to come after her death. (See below.)

This month is MND Awareness Month. One of the aspects being highlighted is its effect on speech, in a campaign called Silence Speaks. Hayley Ladbrooke's account of a week without speaking, which you can read in the link, makes the point. Her father, Robert, has the disease. “I spoke to my dad after completing Silence Speaks to find out how he finds things and he said it’s really hard work and people can turn their back on him. He used to be the life and soul of the party and now people sometimes can’t be bothered to wait for him to talk or they just can’t understand what he’s saying."

Last year I received an email from a young man named Olly Clabburn, who is looking at another aspect of the same symptom, similar to the approach that Jozanne took.

"My name is Olly and I am a PhD researcher at Edge Hill University in Lancashire. My thesis is investigating a therapeutic intervention for people with MND, and how this impacts upon children/young people who care for a family member with the disease, and also children who are bereaved due to MND.  This all stems from my Dad (also a Michael!) and Nan, both having MND when I was younger and me wanting to provide better support for children who are affected by someone in their family having the disease.

"Essentially, my research is investigating the use of a ‘digital legacy’ with people who are affected by MND. This means people with MND creating video messages and recordings of their memories specifically to be given to children in their family to watch and use whilst they provide care, and for when the young person becomes bereaved.  

"I have set up a research page (www.facebook.com/mndlegacy ) and wondered if it is something you might consider including in one of your blogs? I am now at the stage where I can begin to speak to people living with MND who have recorded or currently recording a legacy. First and foremost though, I hope to raise awareness of creating a digital legacy and being a potential project that people living with MND can do for free at home, and also, hopefully help to support some children in the future."

Olly's idea seems brilliant to me, and I hope that he gets a lot of material. My own vocal deterioration seems to have ground if not to a halt, at least to a snail's pace, and people who know me are quite tolerant of my mouth full of marbles. But then I'm one of the few lucky ones.

From I Choose Everything, Jozanne's Diary: 

We had the rest of the week to ourselves, but this was not going to be just another romantic holiday together.  We had other plans and we came prepared.  From the beginning of the illness I have wanted to make DVDs for the children.  I wanted to leave special messages for them on special birthdays.  I also wanted to tell them what I was like as a child, what they were like as babies, and how much I loved and enjoyed them.  Kids want and need to know these things; I know I did.  I loved hearing from my parents about their childhood but also what I was like as a small child.  I know I probably won't be around to see Luke and Nicole grow up, but I want to make sure that, as a mother, I will still be a part of their lives.

In the beginning I thought that I would make a DVD every now and again, but it never materialized.  I just never felt ready and always put it off for 'one day'.  Lately I have noticed that my speech is starting to change, ever so slightly, but I can feel it – as if my tongue is lazy and gets stuck when I say certain words.  I have to work a little harder when I speak.  People who don't know me wouldn't know the difference, but I know it's starting.  We have decided to make the DVDs now before it's too late.  I want to sound like the real me when I leave my special messages for them.

So on Monday morning Dave and I woke up, ready to tackle this difficult task.  While Dave set up the recording equipment, I made brief notes of more or less what I wanted to cover in my messages.  When Dave was ready it was time to begin.  He started filming…   I didn't feel comfortable at all.  In fact, I felt so self-conscious, I was giggling like a little girl.  Too much nervous energy.  I was trying too hard to sound natural, and instead came across fake.  This is not what I wanted.  Dave suggested that I just chat as though I was chatting to them.  This was a lot harder than I ever imagined it would be and I felt so frustrated.  Dave's phone rang and that broke the tension, but the phone call was to inform us that an old friend of mine's husband had committed suicide.  They have two boys younger than Luke and Nicole.  I was devastated.  No more filming that day.

Tuesday was very different.  This time it was real.  My friend's loss and pain became mine.  When Dave started filming, I started crying.  The thought of Luke and Nicole growing up without me became so real, and I now I had the opportunity to leave them with something, unlike Linda's boys who will never really understand why their father left.  What a privilege and special opportunity I have!  Thank you, Lord.  We made quite a number of DVDs in the days that followed and, although it was one of the hardest things I've ever done, it was also very fulfilling.  It felt like a journey that I took with each one of the kids.  My prayer is that it will be as special for them to watch the DVDs as it was for me to make them.

Hard reading

I’ve recently read two books which have been hard to take. One is End to End – with Love x by Lorraine George, an account of her son’s terminal illness of myeloid leukaemia alongside the cycle-ride she did from John O’Groats to Land’s End with a group of her friends. The other is Leningrad: Tragedy of a city under siege 1941-1944 by Anna Reid.  They are both searing accounts of human suffering, and, for me, both raise hard moral questions.

I’ve met both Lorraine and someone whose four great-grandfathers lost their lives fighting for Leningrad in 1942.  So the questions are not merely academic as far as I am concerned.

End to End is described like this on the website of the charity set up to honour Rob George, the young man who died of leukaemia.

“This book tells the story of four years in the life of an ordinary mum (Lorraine George).  It’s a book from the heart, that attempts to record and share what it is like to find your life out of control.

Share the uncomfortable juxtaposition of deep sadness alongside enormous fun and pride. On the one hand End to End – with love. x is a journey through the eyes of a mum, as her youngest son faces a life threatening illness. Alongside this runs an account of her journey, literally from the end to end of Britain, on a bike! After all, a promise is a promise!

This is a true-life account of the surprising strength, determination and power that can be found deep within us.

Life will never be the same again for this mum and her family. Perhaps it will inspire you too?

All proceeds from the sale of this book will go to the Rob George Foundation.”

It is, in my view, a remarkable book, in which you can hear the voice of the mother watching her son suffer and die, alongside her vivid account of the cycle ride which seems to affirm life in spite of the apparent triumph of death. It’s a highly personal microcosm of pain.

Leningrad, on the other hand, is a macrocosm of personal pain. In 1941 Hitler extended his plan to establish a pan-Teutonic empire, from eliminating the Jews, to driving the Slav peoples east in Operation Barbarossa. The beautiful city of Leningrad (now renamed St Petersburg) stood in his way and despite Stalin’s paranoid purges of the Soviet military (or perhaps because of them) at the cost of up to two million lives the city survived and the German army got no further. I had no conception of the sufferings and the depths which the population experienced through the siege.

It is a truly magnificent book, very well written, with the diaries and letters counterpointing official accounts and external sources. It shows human strength and weakness. I think it also shows the inhumanity of power, expressed in war and terror. We too easily forget that others sacrificed even more than us in the face of fascist evil. We forget the price that our allies, whom we now brand as enemies, paid as the price of peace. I wrote to my friend who gave me the book, “How stupid hostility is between nations, isn’t it? I find I’m tired of politicians indulging in the rhetoric of suspicion and fear to justify spending on the arms trade. I do realise that Hitler was an exceptional evil, and that there have been and are others like him who need resisting. It’s a complex world. We need a transformation of human nature, transformed by love. That seems the only answer - but maybe it’s Pierre Bezuhov’s unattainable dream. Perhaps it has to be small acts of kindness multiplied exponentially.”

And I suppose both books raise the same question, which Lorraine poignantly put near the end of hers. “And then of course I don’t understand, or feel the presence of a God anymore. I miss that almost as much as I miss Rob. At best, if God exists, I don’t much feel like worshipping him – where exactly was He when he was needed to step up?”

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 (http://www.binocar.org/content/annrep2013_FINAL.pdf) 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 www.dontscreenusout.org.

Thank you.

Yours sincerely

Down's syndrome children face extinction

I 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 http://legacy.screening.nhs.uk/fetalanomalies

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.

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.

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.

26^th 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

Director-General

BBC

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.  

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?