The Big Ears Theory

Tags

appropriate vocabulary, true stories

Grenouille, surveying Eldest after a haircut: I can see your ears sticking out.  You look like Frodo.

Eldest, mock-indignant:  Frodo?  Like Elijah Wood?

G:  Like Leonard at Halloween.

E, genuinely indignant:  Like Leonard!  Thanks a WHOLE bunch!

G, realising this is a faux-pas and desperately backing and filling:  No, no, not like Frodo.  Ah, um… like Yoda!

Advertisements

Hail and Farewell

Tags

#justiceforLB, #justiceforNico, (un)accountability, appropriate vocabulary, institutions, voluntary organisations

In my Lower Sixth year, my school bade goodbye to the last of the succession of distinguished Headmistresses who had run it with flair and formidable personalities since its foundation, and said hello to its first Headmaster.  Mr. Samuels was highly qualified, and he stayed at the school for the next quarter of a century, steering it capably through some very difficult times, but my father took against him within the first term, after accompanying me to that year’s Prizegiving evening, at which I was officially ‘presented’ with my O-Level certificates.  Clutching my traditional empty diploma tube (the actual certificates having, equally traditionally, arrived at home in the post some three months earlier), I went and sat next to Dad while Mr. S. droned a cringe-making speech, in which he bestowed fulsomely overblown praise on everyone he could think of, turning regularly to face each side of the hall so that all benefited from an equal share of the sight of his countenance.  At last, we got to the point where we would normally have sung the school song, a beautiful three-part canon; but instead, we had to plod through Mr. Samuels’ favourite hymn,  ‘Oh God Our Help In Ages Past’ – unison – before we were dismissed and could make a run for it.  As, following the initial dash for freedom, we walked rather more sedately back down the hill, my father said, in the quiet measured tone that I knew meant he had something explosive on the brew, “Does Mr. Samuels always talk like that?”

“Like what?”

“At such length.  And to so little purpose.  With such liberal applications of flannel and soft-soap.  And revolving on his heels as though propelled by clockwork?”

“‘Fraid so. “

“Hmmn.   Well, whenever you have a school function in future, I have a premonition that I will have a prior engagement.  A thousand ages in my sight would be like this evening gone.”

Years later, my father, a wicked twinkle in his eye, would refer to my erstwhile Headmaster as ‘Soapy Sam, the Mechanical Man’.  Normally the most tolerantly forgiving of men, Dad could never quite forget that Mr. Samuels was responsible for filling one entire evening of his life – an evening he could never retrieve or relive – with so much verbal dross.

I felt the shade of Soapy Sam hovering behind me as I delved further into Sir Stephen Bubb’s blog.  Sammish pomposity, obsequiousness, insensitivity… they are all there, but exaggerated and extended to the nth degree, and apparently unSammishly unrelieved by any actual achievement. Dollops of constipated self-congratulation are topped with swirls of banality (Bubb’s Blog won’t settle for a cliché, no sirree, not where two or three can be stuffed into the same sentence) and a liberal dusting of patronisation.   Providing enough material for a Glasto-sized fisk-fest, the blog is so bad as to be almost beyond parody.  Indeed,  Sir Robin Bogg (‘chief executive of BUBB – the British Umbrella Backing Body’) insists in Bogg’s Blub (‘part of the National Blag Archive’) that boggsblub.blogspot.co.uk is the real deal, and it’s our Stephen’s Bubb-blog that is the spoof.  Being charitable (the Bubbster is very keen on charity), perhaps it’s not his fault; perhaps it’s his misfortune and disability.  After all, His Sir-S.-ness is an Oxford graduate, so he has a right – nay, a duty – as an Oxford Man, to bear in mind at all times his own supreme importance and his overwhelming superiority to the common herd, does he not?  Maybe he just can’t help it.

Here, after all, is a man trained at our most venerated University to ‘gather, organise and deploy evidence, data and information from a wide variety of secondary and some primary sources; to interpret such material with sensitivity to context; to identify precisely the underlying issues in a wide variety of (…) debates, and to distinguish relevant and irrelevant considerations; to recognise the logical structure of an argument and assess its validity; to assess critically the arguments presented by others, and by oneself, and to identify methodological errors, rhetorical devices, unexamined conventional wisdom, unnoticed assumptions, vagueness and superficiality; to engage in debate with others; to formulate and consider the best arguments for different views, and to identify the weakest elements of the most persuasive views.’

Not only that, this most intellectually rigorous of environments trained him in practical skills, so that he can ‘listen attentively to complex presentations and identify the structure of the arguments presented; read with care a wide variety of written (…) literature, and reflect clearly and critically on what is read; marshal a complex body of information in <written> form; write well for a variety of audiences and in a variety of contexts; and engage in oral discussion and argument with others, in a way that advances understanding of the problems at issue, and the appropriate approaches and solutions to them.’

Whew!

But that’s what you get, allegedly, when, like Sir Stephen, you graduate in Modern Greats – Politics, Philosophy and Economics.  Oh my, yes.

I’d already kind of guessed that he didn’t read Greats; and not only because PPE is the favoured discipline for creating a short-cut into the upper echelons of the political world that Sir Stephen revels in.

A Classics scholar would, I hope, be unlikely, in the wake of a Winterbourne post that drew a great deal of criticism from (amongst many others) families whose members have died in ATUs, to have headed the following one – detailing a change of incumbent in the Minister for Civil Society’s office and letting us know just how deservedly cosy he is with both outgoing and incoming Ministers – with ‘Ave et Vale’.

Even a Prelims student of Literae Humaniores would surely recognise this as being far too close to ‘Ave atque Vale’ – the final, heart- and gut-wrenching words of Catullus’ terrible, splendid elegy for his brother; and a phrase and feeling far better suited to Justice for LB and Justice for Nico than to some pre-election political reshuffle.

Multas per gentes et multa per aequora vectus
advenio has miseras frater ad inferias
ut te postremo donarem munere mortis
et mutam nequiquam alloquerer cinerem.
Quandoquidem fortuna mihi tete abstulit ipsum.
Heu miser indigne frater adempte mihi
nunc tamen interea haec prisco quae more parentum
tradita sunt tristi munere ad inferias.
Accipe fraterno multum manantia fletu,
atque in perpetuum, frater, ave atque vale.

Through many countries and over many seas
I have come, brother, to these melancholy rites,
to show this final honour to the dead,
and speak (to what purpose?) to your silent ashes,
since fate now takes you yourself from me.
Oh brother, snatched away from me so cruelly,
at least take now these last offerings, blessed
by the tradition of our parents, gifts to the dead.
Accept, by custom, what a brother’s tears drown,
and for eternity, my brother, Hail and Farewell.

 

Common Trials: Euphemism

Grenouille, after coming last at roulette and blackjack:  “It’s not fair!  I hate losing, dammit!”

Eldest, censoriously: “I think you meant to say ‘Bother!'”

Grenouille, with a Paddington Bear stare: “Bother.  Bother.  Bother.  Bother.  I’ll say bother.  But I’ll mean dammit.”

Blowing Bubbles

Tags

#justiceforLB, appropriate vocabulary, care in the community, independent living, institutions, voices of disability, voluntary organisations

Have needed to be quiet this week because I gave myself something of a fright last week with where I ended up on my ‘Justice for LB’ post.  Having floated the idea of some sort of post-education IPSEA-type website – without, I regret to say, having done enough thinking-through – I now feel it’s incumbent on me to follow it up.  However, like Christopher Robin’s parent’s grandfather’s sailor, I’m more than a bit stumped as to where to begin.

Starting from what I know seems the only possibility, and fragments of database design have been rolling around my brain, but I realise that’s putting the cart before the horse.  I’d need to do a big listening project before I could get anywhere near having a reasonable working template of the overall design of what’s needed, much less start putting the detail in.  Perhaps putting some design ideas down on paper – even if it’s only for someone else to shred as inappropriate or unworkable – might be a possibility.  If nothing else, it might let me brain-dump out ideas that are likely to be more of a hindrance than a help, and which, at the moment, are making me feel that my best option is a precipitate retreat into the deepest, most inaccessible foxhole I can find, before I can be accused of going on in Alan B’stard style: “… if <someone> is needed to save Britain, then I am humbly… HUMBLY… prepared to put myself forward.”

The New Statesman, of course, had in spades what is needed from a true leader.  “Self-confidence” says a (probably confidently self-styled) business guru, “is the fundamental basis from which leadership grows.”  So a leader among leaders will be supremely self-confident, right?  Too right.

Hear ye the the words of the Lord – or at any rate the good knight – Sir Stephen Bubb, Chief Executive of the Association of Chief Executives of Voluntary Organisations, whose blog is part of the national Blog archive at the British Library, whose provider members in learning disability are top, and who hath, moreover, a Plan (Capitalised but with no capital – that will have to come from social funding).  Hear ye the words of the Plan, which shall be callèd ‘Bubb’s Challenge’ before the face of all peoples, which hath been inscribed for time and eternity, not on mere tablets of stone, but on the back of a breakfast.  For lo, the Joint Improvement Programme of Winterbourne hath been utterly overthrown, and its deadlines are as lines dead in the water, (despite having been missed and/or overshot) and there hath been weeping, and wailing, and gnashing of teeth.  Yet verily, the nations may be comforted, saith the Bubb, for his Plan is entirely doable and hath been accepted by person or persons unspecified. And yea, buildings will be invested in and ten year contracts commissioned and <needle-screech across recording of celestial music>.

Seriously, go and read it for yourself.  It’s quite eye-poppingly, stomach-churningly un-self-aware, unaware of the situation of the people unto whom it is proposed that the Plan (as writ on the Holy Bacon Rasher) will be done, and equally unaware of the previous failures of precisely the solutions the Plan appears to be proposing.  Read the comments, and weep.

At one point, the Almighty Bubb pronounces on former attempts to ‘solve’ the learning disability ‘problem’ “… in the 80s when it was determined that all mental health asylums be closed and people cared for in the community. A patchy programme but one everyone now knows was exactly right.”  Exactly right?  Exactly right?  It was the right idea, but I have a fistful of as-yet-unpublished Schoolroom Centre stories that say the programme in its patchiness was light-years from exactly right.   Its rightness extended no further than my great-grandmother’s dictum that ‘patch upon patch is better’n holes’.  If it had been exactly right, we wouldn’t now have over 3000 people incarcerated in ATUs.  It was shabby, penny-pinching, secondhand and second-rate.  ‘Patchy’ barely covers it.

After a thorough blasting from people who actually know what they are talking about, His Bubbliness came clean and admitted that far from having a Plan, he and his angelic fellow-chiefs ‘are at the early stages of scoping the remit of the steering group’.  Which sounds less like coming clean than an attempt to soft-soap.

The Americans have a delightfully vulgar phrase which means ‘to use flattering or high-flown language in an attempt to deceive’: blowing smoke up somebody’s ass.  In the Plan’s case, there seems to have been something similar going on, but with bubbles.  Or Bubbles.  Alas, I fear this bubble was pricked before it was fully blown.  And so, good night, good knight.

For bubble-pricking and otherwise cutting down to size, another guru-ish website, Businessballs, recommends asking:

• ‘What is your evidence (for what you have said or claimed)?’
• ‘Whom have you consulted about this?’
• ‘How did you go about looking for alternative solutions?’
• ‘How have you measured (whatever you say is a problem)?’
• ‘How will you measure the true effectiveness of your solution if you implement it?’
• ‘What can you say about different solutions that have worked in other situations?’

I shall go and put questions to myself and others until I’ve come up with some reasonable answers about the website.  Please feel free to pitch in any that you think I ought to be considering.  Thank you.

 

 

 

 

The Taxi

Tags

Common Trials, kindness, true stories

Lovely taxi-escort lady:  “All ready for your last week of term?”

Grenouille:  “Yes.” <grins widely>  “And next week I can have a lie-in.”

LTEL:  “Yup.  No more early morning rides.  Won’t you miss them?  I don’t know what I’m going to do without you.”

G:  (airily unconcerned)  “Oh, you’ll find something.”

Justice for LB

Tags

#justiceforLB, adult LD services

Last Friday – 4 July – was a peculiar day.  The first anniversary of LB’s death somehow sharpened up the edges of the sorrow, so that it cut in more keenly.  At the same time, being part the visible wave of support for him and his family was an uplifting experience.  In case you missed it, on the 4th, people were invited to change their social media profile pictures for a specific one of LB – this one:

– and explain why to anyone who happened to be reading.  As far as I know, there’s no way to track how many people changed their profile pictures, but during the day, my social media feeds went significantly monochrome, and the 107 days site took over seven thousand hits – 7,226 to be precise – compared with its usual daily average of around 550.  On Twitter, somebody said their notifications looked like ‘a Connor Sparrowhawk chorus line’ and #justicefor LB and #107days evidently high-kicked their way into a great many people’s consciousness.

I’ve learned a lot during #107days, quite a lot of it about stuff that is apparently supposed to happen but often doesn’t (person-centred planning/care, transition management, family involvement, encouragement of dudes’ aspiration).  I also heard a lot more than I wanted to, about how the same-old, same-old attitudes I saw twenty-whatever years ago still persist, to discount, dismiss, and ignore dudes.

One thing I haven’t found is a clear, coherent, comprehensive, comprehensible source of good information.

For example, in pursuit of a clearer picture of what’s happening in Grenouille’s area of Dude World, I’ve just been on a local Authority information day about the Education, Health and Care Plans that will be issued in place of Statements from 1 September this year.

(Just so’s nobody starts hyperventilating – if your child has a Statement, it won’t be whisked away on 1 September and replaced with an EHCP.  At some point over the next three years, probably at one of your child’s Annual Reviews, the Statement will be re-cast as an EHCP.  Until then, your child’s Statement will stand and carry on as it has done up to now.  Anybody who applies for formal support for their child on or after 1 September and whose child is deemed eligible, will get an EHCP.)

The info day was curate’s egg of an event, and illustrated very clearly how some people whose bread and butter is dealing with dudes’ affairs, don’t have a clue what life is like in Dude World,

The first session was on Personal Budgets, and was given by what I presume was a Council accountant.  I felt quite sorry for the poor man; obviously used to giving presentations to fellow-officers and maybe to councillors, he had equally obviously not been helped to think about pitching his spiel appropriately to a different audience.  His Powerpoint slides were dense with text and jargon – funding streams, top-slicing, notional costs.  But some of the parents of dudes present had dudesome characteristics of their own, including a refusal to pretend to understand jargon and a willingness to state their views bluntly.

The Council  bean-counter found himself being heckled – “What’s that supposed to mean?  This is far too complicated!”

“It’s intended to make things more transparent,” said the Council officer, placatingly.

“Transparent?  Well, I don’t see it, mate.  You need to make it simpler!”

“Yes!” said the Council officer, eagerly trying to steer the conversation in the direction he wanted it to go.  “This will make it simpler!  A single budget instead of multiple funding streams!  A one-stop shop!”

“Hmph,” said the parent.  “Well, we all know that it doesn’t matter anyway.  At the end of the day, the Council will just go ahead and do what they feel like, no matter what we say.”

As hilarious and excruciating as the episode was, the parent was making an important and valid point.  I’m sure that, from that parent’s perspective, the prospect of EHCPs does feel like being subjected to a familiar bait-and-switch trick.  They see a shiny new system being dangled in front of them, twinkling with promise of making things better for their child.  But they find that, as they suspected, the system is too complicated to follow.  It is a reasonable, experience-based expectation that the next thing will be someone saying, “Since you can’t manage this, we’ll have to manage it for you.  Here’s what’s going to happen,” and once again they will have to like what is handed down to them, or lump it.

One of the other people there – also asking the awkward questions – was an IPSEA volunteer.  IPSEA, if you haven’t already come across it,  is an organisation whose full, what-you-see-is-what-you-get name is ‘Independent Parental Special Educational Advice’.  I don’t have enough superlatives to praise it.  It has been my constant go-to ever since we began to have contact with education services for Grenouille, and it became apparent that my natural, inbuilt arsiness was proving no longer enough, on its own, to get the provision G needed.

The IPSEA website gave me the ammunition I needed to keep shooting for a properly quantified Statement for G, with types and amounts of provision specified in precise detail. The organisation helped us into and through the Tribunal process – including by arranging the pro bono services of a barrister – when protracted negotiating over drafts had got us precisely nowhere.  It gave me what I needed to feel able to threaten judicial review when the Statement wasn’t being implemented.  I’ve referred numerous parents to IPSEA, and I know that, just as I did, they have found the people at IPSEA to be endlessly helpful.  (When I grow up, I want to be just like them….)

The website is easy to navigate, its principal sections being ‘What you need to know’ ‘How we can help’ and ‘Hot topics’, with easy-to-follow menus and subsections on the section pages.  The language is clear, non-technical and easy to read, although not Easy Read.  The advice given is very carefully matched to specific situations – for example, in considering exclusions, there are 17 – yup, count ’em seventeen – different advice sheets, so that the parent can pick exactly the right one, depending on how long their child is excluded for, and what the child’s SEN situation is – whether they have ‘no statement’, a ‘good (quantified) statement’ or a ‘bad (unquantified) statement’.  And then there’s another 17 sheets for children in Wales, because the legal framework is slightly different there.

It sounds hellishly complicated, but because the path through to the right sheet is laid out in short, clear steps, it is easy to find what you need.  The cut-the-crap attitude is great too, because it is so targeted at what its audience needs.  Parents whose child has been excluded, or refused a statement, are parents in crisis.  A panicking parent needs concise, precise information; they haven’t got time to assimilate, much less mull over, any unnecessary information.

Crucially, IPSEA is not funded by any government or public bodies, so it can afford, morally, to be kick-ass in defending dudes’ education rights.  An example is the IPSEA contribution to the recent Haining v Warrington judgment, which parents will be able to use in future to challenge cost-based decisions made by local authorities.

IPSEA will doubtless be expanding their website to cover the altered, extended and new rights under EHCPs, but I think we could all do with a similar website to deal with dudes’ post-education rights – in employment, housing, healthcare, financial and judicial matters (amongst others).

Mark Neary pulled together some of the legislation relating to dudes’ rights to live unfettered lives in his stonking ‘Home Rights’ blogpost.  That sort of information, along with citations of relevant case-law including the Nearys’ own landmark judgment, could be the end-point of a ‘What you need to know -> Housing -> Your right to choose where you live’ track.  I see the final choice on each track as being either an ‘Easy-Read’ or an ‘Extended-Read’ version of the same information, so that the site is dude-friendly as well as supporter-friendly.

It would, of course, be a huge job; it would need lawyers, learning disability specialists, database and website designers/programmers, all to work together to make it as useful and comprehensive as possible.  But if pulling all the information together is going to be difficult for a group of highly-trained professionals, how in the name of the wee man are dudes and their families/friends supposed to do it individually?

Justice for LB surely demands that systems’ ‘Divide and Rule’ mantra be overthrown by the #107days principle of ‘Unite and Conquer’.  Anybody up for contributing?

365 Days

Tags

#107days, #justiceforLB, #justiceforNico, preventable deaths

No man is an Iland, intire of itselfe;
every man is a peece of the Continent, a part of the maine;
if a Clod bee washed away by the Sea, Europe is the lesse,
as well as if a Promontorie were
as well as if a Manor of thy friends or of thine owne were;
any mans death diminishes me,
because I am involved in Mankinde.

John Donne
Meditation XVII

L.B.
17.11.1994 – 04.07.2013

In the Ramtops village where they dance the real Morris dance, for example, they believe that no-one is finally dead until the ripples they cause in the world die away – until the clock he wound up winds down, until the wine she made has finished its ferment, until the crop they planted is harvested.  The span of someone’s life, they say, is only the core of their actual existence.

Terry Pratchett
Reaper Man

Let us now praise famous men
And our fathers that begat us
Such as did bear rule in their kingdoms
Men renowned for their power
Leaders of the people by their counsels
And by their knowledge,
Such as found out musical tunes
And recited verses in writing.
All these were honoured in their generation
And were the glory of their times.

And some there be, which have no memorial
Who are perished as though they had never been.
Their bodies are buried in peace, but
Their name liveth for evermore.

Ecclesiasticus, 44:1
Setting by R. Vaughan Williams

All The Young Dudes

 

 

…well, all the ones for whom I could find pictures…

Rigg, revisited

Tags

#107days, institutions, medication, true stories

A question – or series of linked questions – has been running through my head, about why Connor’s epilepsy and Nico’s musculo-respiratory difficulties were so disastrously ignored, and why Steven Neary’s autism was dismissed as an irrelevance during his stay in the positive behaviour unit.

Was it that, as learning-disabled dudes, they and their physical ailments were discounted?  In Connor’s and Steven’s cases, was it that their other symptoms were viewed – and dismissed – as mere manifestations of their supposed mental-health problems?  Is it that physical illnesses are seen as things that come from outside and happen to a person, thus meriting sympathy, while mental difficulties are seen as resulting from a failure to manage one’s internal landscape, so that the sufferer deserves only censure for colluding in the causation of their own problem or illness?  Or is it just that as people specialise, ‘knowing more and more about less and less’, they can no longer see beyond their own specialism and lose the ability to spot things outwith their narrowed boundaries?

I don’t know what the answers are.  But I’m pretty convinced that if a person has a label of learning disability or mental illness, then the attention paid to their physical state tends to be less thorough than it would otherwise be.

I met Richard through my membership of one of the University societies.  He had red hair, blue eyes, an ethereally clear tenor voice, an inventive way with wordplay and a keen appreciation of puns, a talent for calligraphy and for creating beautiful, complex monochrome ink drawings with a fine-nibbed steel pen, an enviable turn of speed on his racing bike, a degree in pharmacy, and insulin-dependent diabetes.

He had wanted to read medicine, but his diabetes was of the unstable, swinging-wildly-from-high-to-low-blood-sugars sort that was then (and, for all I know, may be still) called ‘brittle’.  The medical schools wouldn’t accept him, even with top grades, as the view was that the stress of medical training was likely to aggravate his condition, and the condition was likely to prevent him from ever taking up a post as a doctor.  The pharmacy degree was a second-best option, and after graduating, he decided that actually, he didn’t want to spend his life behind a counter in Boots, checking pills under strip-lights.  Instead, he went to work for the City Council’s Leisure Department, running sporting events, which at least got him out into the daylight, although it didn’t particularly tax his capabilities.  “I just have to make sure they know what they’re doing, where they’re going – and whether they’re taking sandwiches,” was his cheerfully wry take on his job spec.

Nowadays, most insulin-dependent diabetics will test their blood glucose before every meal, using a smart meter that calculates a dose of insulin precisely tailored to their blood-sugar level, their body’s insulin sensitivity, and the carbohydrate content of the food, but twenty-something years ago, blood-glucose test strips were not available on a GP’s prescription.  You either had to buy them (at an astronomical retail price) or cadge them from a sympathetic hospital doctor.  Without the flexibility offered by frequent blood testing, the diabetes treatment regime consisted of fixed doses of insulin, and fixed amounts of carbohydrate permitted per meal, and if you miscalculated, you wouldn’t know it until either (a) you did a pee test and found you had been very sugary for the past several hours, or (b) the bottom fell out of your blood glucose and you went ‘hypo’.  Richard had a tame hospital medic who kept him supplied with strips, but a decade and a half of the no-test regimen had taken a toll.  Having run sugary for months and years, and then having been nagged to rein in his blood-glucose drastically,  he no longer noticed hypo warning signs until his blood-sugar was way below normal, and when he did go hypo, it was often spectacularly, complete with staggering walk, slurred words, chalky complexion and an obstinate insistence that there was nothing wrong with him.  All his friends knew that “‘M fine!  Nothing wrong with me!” was the cue to pin him down and force him to puncture a finger to prove himself mistaken.

Nevertheless, he managed for a long while not to let the diabetes affect his work, hauling himself in on time despite still being groggy from overnight hypos and the terrible nightmares that they generated, and surviving erratic mealtimes by crunching dextrose tablets and swigging sugary fizzy drinks.  But when he started having ‘fitting’ hypos, during which his blood-glucose would plummet so rapidly and so far that he would collapse, unresponsive and twitching, work became problematic.

A little earlier, his annual eye check-up had revealed that the the years of high blood-sugars had caused diabetic retinopathy, and he needed extensive laser treatment to cauterise leaking capillaries at the back of his eye.  The laser treatment began to affect his sight – “My own permanent private firework display” – and between that and the hypos, he had to hand in his driving licence.  Then one dreadful evening, as he sat in the train on the way home, he saw beyond the window a red sunset that had nothing to do with the atmospheric conditions and everything to do with a haemorrhage inside his eye.  Further laser treatment, surgery to remove the blood-filled vitreous from his eye and replace it with liquid silicone, another operation on the other eye to repair a detached retina, all failed.  Although he could still distinguish between dark and light, he had so little useful vision left that he was registered blind.  He had lost his sight, his job, and his ability to draw, write, read, drive and cycle.  Now that he could no longer read music, and could not easily move around safely on stage, he also had to give up most of his singing, and with it, most of his social life.

He was assigned a social worker, who, while in many ways a pleasant and well-meaning woman, nevertheless drove him nuts.  Herself blind since birth, it seemed she could neither understand nor empathise with the feelings of someone mourning the loss of their sight.  Nor, apparently, did it occur to her that Braille – about which she was volubly enthusiastic – was going to be problematic for a person whose fingertips were scarred by years of fingerprick testing and numbed by diabetic neuropathy.  About the time that I moved to the south-east of England, Richard got himself onto a Master’s course in computing, hoping that technology would offer some fixes that could help him compensate for his disability, but despite text-enlarging screens, text-to-speech software, and the services of a note-taker and reader, he was unable to complete his dissertation and had to drop out.

After that, it could astonish no-one that he should be diagnosed with depression.   He was prescribed the latest in SSRI anti-depressants and offered a course of the newly-popular cognitive behavioural therapy, which left him rueful and exasperated with the psychiatrist, whom he nicknamed ‘Dr. Optimism’.

“I’m his hard case,” he told me, with a soupçon of relish, during a phone-call.  “I keep asking him how developing a positive mental attitude is going to help me see better.  He says it’ll help me adapt to my blindness and I tell him I don’t want to adapt.  I don’t like being blind, so I don’t want to accommodate to it, would he?  He says it’s not about him and off we go again.”

“What I’m hearing is that this CBT malarkey isn’t what you want.  So, what do you want?”

“What I WANT is to have my pancreas and my eyes working again.  I’d SETTLE for being able to do a few useful things and a few enjoyable things.  What I GET is isolation, boredom and a patronising git who is telling me in so many words that I need to buck my ideas up a bit.
“I don’t want therapy and I don’t want people throwing pills down my throat to put themselves out of my misery.  I don’t want to be treated as though I am the problem, when it’s my circumstances that are the problem.  If I’m going to talk, I want it to be to someone who can understand that, which is why I hope you won’t mind if I phone for a rant from time to time.”

“You’ll be welcome.”

I don’t recall if or when he stopped taking the happy pills, but I clearly remember how, over time, his outlook deteriorated.  Even down several hundred miles of phone line, the misery was clearly audible.

“I feel really awful.  I’m tired all the time, it’s an effort to eat, and even if there were somewhere for me to go, I don’t think I could be annoyed going.  They tell me that it’s all psychosomatic, but that doesn’t make it any less unpleasant to live with.  I can’t see any good reason for carrying on living.  Nothing I do has any value, and I don’t enjoy doing it, so what’s the point?”

I cradled the phone against my ear, feeling my spirits sinking into the horrible empty gulf that had opened up in my middle, and picked my words with extreme care.  “I would miss you dreadfully, we all would.  But I am there for you very little of the time, and I know the same goes for everyone else.  If you want to go, you have the right to go; and with the love and good wishes of your friends.”

“You’d let me go?” he said, disbelief in his voice.

It felt safe to laugh a little.  I won’t pretend it wasn’t a little sawtoothed, but I was glad I could manage it.  “Well, from this distance I could hardly stop you anyway, could I?”  I paused, sought for a tone that would be serious without being solemn.  “But look, even if I could, I wouldn’t, not if you get to the point where you are truly sure you’ve had enough.  Ever since I’ve known you, you’ve been pushed around by diabetes and blindness and by people you’ve met because of the diabetes and so forth; I hope you know I’m not up for joining in with pushing.”

Very quietly: “Thank you.”  Silence.

Hesitantly, I said, “One thing – how would you feel about letting me know in some way if you do decide to go?  I promise I won’t try to talk you out of your decision, but I’d like to be able to say a proper goodbye.”

Long pause.  “I know you won’t try to stop me, although it’s a delaying tactic, isn’t it?”

“I suppose it is.  If you don’t feel able to to make any commitment about it, that’s fine too.”

Even longer pause.  “OK.  I guess you’ve earned it.  I promise I won’t leave until I’ve said a proper goodbye.”

The next phone call I got was not from Richard, but from his parents, who lived in northern England.  “He’s not answering his phone.  We’ve called the Infirmary, and he isn’t there, so we called the social work department, but they say that owing to confidentiality, they can’t give us any information about him or even confirm that he’s a client of theirs.  You know his friends and where he might be likely to go – would you mind making a few enquiries?  We’re worried….”

After calling everyone I could think of, to no avail – and after a couple of local friends had been persuaded to go round to the flat and had reported their failure to get an answer to the loudly ringing doorbell – I phoned the social work department myself.  By now, it was late in the evening and I didn’t get Richard’s social worker, but the duty cover person, who repeated the spiel about confidentiality, but added, with what seemed to me to be slightly odd emphasis, “If you have concerns that a person may have suffered an incapacitating health problem at home, you need to call the police.  They can do things we can’t.”

I called the pollis and had a pleasant chat with the station officer, who confirmed that if no-one was answering at home, the police were permitted to break doors down to see if the person was ill, and to institute enquiries if someone was missing unexpectedly.  “Well, as I’ve explained, his family has good reason to worry about his physical health, and it’s not like him to disappear without warning.  But you might want to call the duty social worker before you send a team out with a battering ram.  I just have a prickle in the nape of my neck which says that fella knows more than he’s willing to tell me; but he might be able to tell YOU and save everybody a lot of worry and trouble.”

The policeman called back ten minutes later.  “Ye were richt aboot the social worker.  We dinnae need tae go an’ pit the laddie’s door in, an’ Ah can tell ye he’s in whit they ca” a place o’ safety, he just disnae want emb’dy tae ken whaur he is.  But dinnae fash yersel’.  They lot doon at the social mayn’t be able tae say whit’s whit, but come the morn, Ah’ll be sendin’ one o’ my lads up the road tae — er, up the road tae whaur he’s bidin’ the noo, tae mak’ sure he’s a’richt.  ‘S’matter o’fact, Ah micht just be takin’ a turn oot there masel’ and tellin’ the heid high yins there that they need to rethink their confidentiality policy ef’n it means fem’lys huv tae start wastin’ pollis time, settin’ them lookin’ fur folk that arenae really missin’.”

Having noted, as I am sure the canny pollis meant me to do, that telltale ‘up the road’ phrase, I was accordingly unsurprised to get a call from Rigg a couple of days later.  In a flat, bored voice, Richard said that Dr. Optimism had become sufficiently worried about his, Richard’s, state of mind and ‘suicidal ideations’ to arrange for his enforced admission, and that he would prefer it if I didn’t share with his parents that he was an involuntary patient.  I said I was sorry to have disturbed him, and was it all right to let his parents know that I had spoken to him, but not to let on his location?  He agreed, indifferently.

Over the next few months, I received intermittent calls from the Rigg patients’ payphone, which I would call back into.  After a few weeks in hospital, Richard’s benefits had been stopped, and coins for the phone were in short supply.  He was having a lot of group and individual pyschotherapy, and had been messing about trying to be creative with clay and oil paints in occupational therapy, but he sounded as down as ever.

One day, a call came in, with the distinctive ‘clonk’ at the beginning as the 10p piece dropped at the other end.  “Hiya!”  said the familiar voice, with a jauntiness that I had almost forgotten.

“Oh, hiya, d’you want me to call back?  Usual number?”

“I’m not in the Rigg,” said Richard, with emphasis.  “I’m in the Infirmary.  Here’s the number.”

I dialled and heard only half a ring before the receiver was snatched up.

“So, what gives?  You sound remarkably well for someone who’s in the Infirmary.”

“Had my diabetes checkup.  Guess what?  My serum creatinine and blood urea nitrogen are through the roof and I’ve got proteinuria levels that mean you could make omelettes from my piss.  I’ve just spent the last twenty hours on dialysis and I’m completely bloody knackered, but I feel like myself again.  All the crap in my system, all the poisons my kidneys haven’t been filtering out – they’re the reason I’ve been feeling so utterly shite.”

I was too stunned to be able to utter a word.

“And I’ve wasted six months in that fucking hellhole” – his voice suddenly split and the next few words came out as gasps –  “While they they tried to cognitivefuckingtherapp me out of being blind and having kidney failure.”

Slovenshite ad infinitum.

Tags

#107days, #justiceforLB, #justiceforNico, (un)accountability, adult LD services, institutions, preventable deaths, Sloven Health, true stories

Eight months ago, his mother and Team LB began hearing the first whispers that Connor Sparrowhawk was not the only young dude who had died as a result of failings in the care provided by Southern Health.  That Connor’s was not the first family to struggle down an unclear path, hampered by opaque and oppressive processes, to find out what happened to their son and why and how he was given ultimately fatal non-care.

At the beginning of June, Sara Ryan, Connor’s mother, finally heard directly from the other family.  And a few days later, the other mother, Rosi Reed, at last felt able to let Gail Hanrahan tell the story of her son, Nico.

Looking at pictures of Connor and Nico, I am struck by their contrasting yet complementary appearances.  Connor’s rugged handsomeness, topped by unruly dark curls and framed by sharp sideburns, is Byronic, almost Heathcliffian.  Nico is in the mould of Edgar Linton, with delicate features, enormous blue eyes, fair colouring and red-gold hair.  Both notably good-looking lads, in their different ways; both infinitely beloved; both desperately missed and mourned.

********************************************

Up until the point that Rosi Reed contacted Sara Ryan, the Slovens had been doing a cracking job of sweeping Nico’s fate, and the anguish of his family, under the carpet.  In fact, Nico’s mother didn’t feel that Sloven had even bothered with the carpet; she described herself and her family as ‘the dust in the corner’.

Nico had multiple, severe needs owing to an undiagnosed syndrome resembling cerebral palsy.  He had attended a residential school; sending him there had been a wrench, but the school catered perfectly for his needs and he flourished and progressed.  Problems arose when Nico reached school-leaving age and there was no suitable adult provision available for him.  A placement was proposed, but the facility was clear that it was not able to cater for Nico’s high level of need.  The family were told that unless they found somewhere else within the following six weeks, Nico would be transferred to ‘a place of safety’ which could be anywhere in the country ‘and once there it would be almost impossible to get him out’.  Desperate to keep Nico near them, his family agreed to his transfer to a small Oxfordshire ‘home for life’ run by Ridgeway partnership, despite their concerns that it also was incapable of properly supporting his needs.

They were right to be worried.  Nico’s person-centred care plan, which had kept him well and thriving, was ignored.  The daily physiotherapy, and the twice-weekly speech therapy and hydrotherapy that Nico needed to keep his breathing and swallowing muscles working properly, stopped as soon as he transferred.  The therapies were never officially reinstated, despite protests from Nico’s family and from concerned health professionals, some of whom gave their own time to offer therapy, although they could not give Nico the level of therapy he needed and had previously received.  He developed muscle spasms and had episodes of choking on his own saliva, which were potentially life-threatening, yet still he received no planned therapies. His family watched him become ‘thin, depressed and frightened by the care’ (care???) ‘he received’.

Ridgeway Partnership was taken over by Southern Health in 2012, but during the eight-month handover process (described by Katrina Percy, in a staff information video, in glowing terms of high-quality provision), there was no improvement to Nico’s living conditions.  His family were trying to arrange adapted accommodation and develop a support team so that he could move back home, when the call came to say that a member of staff had found Nico ‘not breathing’ in bed.  Like Connor, he was pronounced dead at the John Radcliffe Hospital; like Connor, he had already died before he got there.

And, just as for Connor, the Sloven obfuscation machine lumbered into steamroller motion.  The Trust refused to discuss the circumstances of Nico’s death with the family, who had no information whatsoever about how their son and brother died, until they received the coroner’s report nine months later.  Sloven completed a ‘root cause analysis’ in 2012, but refused to share it with the family on the outrageously patronising grounds that  ‘It was felt that it may be too distressing for you.’  There was no external investigation.

It appeared that staff, like the family, received no support.  The family found themselves consoling and comforting staff.  I have no information on how Nico’s housemates may have been supported to cope with his loss, but judging by the non-help that Connor’s fellow-residents received, I for one would be prepared to take a punt on support for Nico’s friends being as conspicuous by its absence as it was for his family and carers.  Indeed, just like Connor’s family, Nico’s family received quite the reverse of support.  They were bullied, disrespected, isolated and ignored.

Unlike Connor’s mother Sara Ryan, Nico’s mother Rosi Reed did not have an established public and social-media profile that she could use as leverage in cracking open Sloven’s apparently impervious façade of ‘nothing to see here, move on’.  But now she’s seen how it can be done, Mrs. Reed is up there hammering energetically.

It is not too late for Sloven to do the right thing by the Reed family.  They could still set up an independent enquiry, with full powers of access and disclosure.  Nico died on Sloven’s watch, after repeated warnings about the gravity of the risks to which he was being exposed though gross lack of therapy.  Sloven have the choice about how they deal with his death.  I don’t for one minute suppose that the Slovens are going voluntarily to reverse their previous choices and start doing things with regard to Nico properly, openly and transparently, any more than they are being open with Connor’s family.

But let’s be clear:  The path of openness, transparency, accountability and simple human kindness is open to the Slovens.  They are consciously and deliberately choosing not to take it.