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 (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

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.

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
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.  

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.

Indoor wheelies

I have been reminded indirectly by a lovely friend over the pond that I've not posted much about what I'm up to. So here first is something about my smart super wheelchair.

You may remember that before the summer at the MND Clinic I was enquiring about hoists in cars and the fab Jenny Rolfe exceeding my hopes. I don’t want to bore you with a long story, including my miscalculations.

With the help of our local MNDA, I eventually chose an Invacare TDX Neuro Chair, with the central drive wheels, for ease of manoeuvring round the tight corners in our house, and also with a riser. It’s actually not so good for reversing into my lift (it does wheel-spins - not good for the carpet!), but over all it’s a nifty machine, and the grandchildren enjoyed going up in the world. And it is a surprisingly useful facility, as I found on Friday 23rd October at the excellent PLS study day in Oxford (see next post).

Then it’s been a matter of choosing the car and the hoist. We’ve long liked Skodas and the Yeti looked as though its boot opening was high enough to take the wheelchair with its back tipped down. We supplied all the dimensions to the dealer and the hoist fitter who breezily confirmed that it would be fine. The full weight of the chair was 148 kg in all; the BrigAyd hoist was said to be man enough for 150 kg.  So all looked good. 

Well, it was – to a degree. When we got to the dealer’s to pick up the car complete with hoist, the fitter asked us how heavy the wheelchair was and he sucked his teeth and said, “You really need a 200 kg hoist. This is very slow.” Actually, to get the chair in you have to remove the footplates, the armrests and the headrest (which I guess come to about 15 kg), as only without them can you get it in – so it’s quite an operation both before loading and after unloading. That means it would be quite unsuitable if you’re on your own. I suspect another chair might be more streamlined and less complicated for embarking and disembarking.

The Yeti itself is a lovely vehicle. Ours is petrol; so no risk of the VW diesel wheeze! We’re a bit surprised how much room the hoist and wheelchair take up in the capacious boot. I suppose no solution is perfect. However we’ve already enjoyed the increased freedom that the imperfect has provided! So, all in all, we’re pleased and look forward to its coming into its own in the spring.