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.

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.

Tuesday, 1 December 2015

Targeting nonsense

In July Breeze Radio reported that our local South Central Ambulance Service was spending up to 10 hours a week appealing unnecessary speeding fines, because the speed cameras failed to pick up blue lights. "The ambulance service which operates across Hampshire and Berkshire received 3,306 speeding tickets in 2013 to 14. The fines given to South Central Ambulance Service amounted to £330,600."
(Photo: BBC)
Then last week came this extraordinary news, that it could now face a £1M fine for failing to meet targets. How nonsensical! This service which covers four rural counties has its funding cut and then is threatened with having a chunk of that precious funding removed. No one seriously doubts, surely, that the paramedics do their level best to reach patients as fast as possible - even exceeding speed limits, blue lights flashing? No one who has been on the receiving end of their care. Of course, everyone is aware of local stations having been closed in the pursuit of "rationalisation", as the whole trust was an amalgamation of four services ten years ago. 

The BBC reported:

'South Central Ambulance Service (SCAS) could face a £1m fine over its poor performance, a trust boss has said. The service has been given a penalty notice for not meeting the eight minute response target for life-threatening emergencies. Sue Byrne, SCAS chief operating officer, said: "We work hard not to be in this situation. It isn't acceptable when we don't reach patients in time." It is now working to an action plan to improve to avoid the fine being levied. Ms Byrne said: "The amount is down to the commissioners, but it could be £1m. It will have to be paid if we don't improve. "It's a very challenging environment." Low staffing issues have also been highlighted as a concern to be addressed by the service. Its ambulances would need to reach at least 75% of life-threatening emergency calls in eight minutes by the end of the year for the penalty to be lifted. The service said it was currently reaching 72% within the time target. SCAS serves Berkshire, Buckinghamshire, Hampshire and Oxfordshire.'

For me it's a vivid illustration of the stupidity of the culture of targets and fines. It creates an atmosphere of fear and undermines trust which should be at the heart of health care. Let the professionals do what they want and what they're trained to do. Trust them.

Thursday, 26 November 2015

The NHS Mandate

Jeremy Hunt, Secretary of State for Health, has, I hear, agreed to go (or send his minions) to talk to the junior hospital doctors at ACAS, the reconciliation service - at last. It takes a long time, it seems, for ministers to listen. So it was with a certain amount of scepticism that last week I read and tried to understand the Government's consultation document on the future of the NHS, and then filled in the response form. I found out about the consultation only after reading about a Guardian article on the subject by Ann Robinson, not thanks to the Government making it known. I received an automated acknowledgement after I'd submitted my response. I wonder, actually I very much doubt, whether any human being, besides you will bother to read it, let alone take any notice of it. Already Mr Osborne's Autumn Statement has had implications for health and social care provision in the local government settlement, which close down investment.

Anyway, here is is my response:

1) Do you agree with our aims for the mandate to NHS England?
I disagree with a number of implications in the priorities and aims:
1.    That ‘preventing ill health and supporting people to live healthier lives’ is only the remit of the NHS. If other budgets are cut, e.g. education and social care, than that aim cannot be achieved.
2.    That the present GP system does not provide good 24/7 care. As a patient with a chronic illness, this has been far from my experience. This aim appears to militate against small GP practices.
3.    Defining as ‘long-term’ a mandate lasting ‘three or more years’ invites the possibility of continual uncertainty and upheaval to the service. It needs guaranteed stability.
I would question also the assumption that the patient knows best implied in the priority: ‘People should be given more power and control over the care that is provided to them’ whilst agreeing that it should be that ‘services are arranged around their needs and they are supported to manage their own health.’
I agree that the mandate should be clearer and more accessible to the public.

2) Is there anything else we should be considering in producing the mandate to NHS England?
Clarity and accessibility means avoiding language incomprehensible to the public, such as: ‘in-year deliverables and metrics to measure progress’ whose meaning eludes an English graduate.

3) What views do you have on our overarching objective of improving outcomes and reducing health inequalities, including by using new measures of comparative quality for local CCG populations to complement the national outcomes measures in the NHS Outcomes Framework?
The aim of increased transparency is a laudable one, but it needs to be accompanied by increased trust, particularly of health professionals. The aim of delivering equally good service nationwide is also clearly desirable.
There is a danger in this target-driven objective of unfairly stigmatizing skilled professionals in challenging situations and driving them away from where they are most needed.
There is a further danger of diverting professionals from their primary calling of care into a culture of form-filling. This is counterproductive in the pursuit of excellence.
There is also a danger of league tables being used as ammunition in political argument, which ultimately demoralises rather than encourages. This is the stuff of bad management.

4) What views do you have on our priorities for the health and care system?

In headline terms, your priorities are ‘motherhood and apple pie’
You want to create a healthier society, particularly focusing on younger people. However, this seems less a function of the NHS than of Education and recreation.
Dementia care and research is clearly an increased priority. I am glad the government wants to put effort into those – as well as other areas of mental health. The neglect of mental health ought to be redressed; but this will need considerable financial investment both in the NHS and in community social care.
Transparency and simplicity from the patient’s perspective is desirable. However the security of digital records also needs to be paramount. The government’s principle should be to rein back on centralised record-keeping, rather than extending it. The citizen’s privacy should normally trump efficiency. Retelling one’s symptoms is a small price to pay for individual liberty.
However, creating new rights, such as the ‘right to a specific named GP’, runs the risk increasing the burden of litigiousness surrounding the medical profession as does the comparison of the health service with the airline industry – with the possibility of suing for late appointments for example. The healthcare industry is entirely different from a commercial enterprise, and should not be shoehorned into becoming one.
Whilst I am in full agreement with the aim of preventing ‘avoidable ill health and premature mortality’, I think the assumption that increasing longevity is a desirable aim should be questioned. Officiously prolonging life is not a great good and should not be ‘a metric to measure progress’. Good end of life care, however, should always be a top priority.

5) What views do you have on how we set objectives for NHS England to reflect their contribution to achieving our priorities?

As already indicated, I have some reservations about the possible implications of where the objectives are specific. Otherwise they seem general enough to be open to whatever interpretation is required by policy makers. I do notice the final objective for the NHS to make money, or to be involved in its generation.
Finally it needs to be said that this consultation process is particularly opaque. The consultation document is not easy to follow, what the questions are asking isn’t obvious and where to send this response form is equally unclear. You could for example simply say, ‘Thank you for taking the trouble to complete this form. Please now send it to’