Alarming.

Tags

(un)accountability, autism, care in the community, charities, coroner, court proceedings, independent living, inquest, institutions, learning disability, true stories, voluntary organisations

Another week, another inquest. Actually, this week, two of the ghastly things: Oliver McGowan‘s in Bristol and Danny Tozer‘s in York.  The Bristol Post is doing a sterling job of summary reporting of what was done to Oliver and how it is being presented in court (big shout-out to the Post’s education reporter, Michael Yong, whose coverage of this epitomises local journalism at its finest).

Meanwhile, George Julian is live-tweeting Danny’s inquest.  There are grim similarities between the treatment of both these young men, and also with what was done to Connor Sparrowhawk.  All three had epilepsy, autism and varying forms of learning disability.  All three had their epilepsy discounted, being treated as though its symptoms were behavioural or mental-health problems, rather than signs of a physical brain malfunction.

Danny’s epilepsy manifested itself as tonic-clonic seizures, the sort that used to be called ‘grand mal’.  It was known that if one of Danny’s seizures lasted more than five minutes, he needed medical attention, and it was also known that he was susceptible to seizures at any time.  The logical inference to be drawn from this was that Danny shouldn’t be unobserved or unmonitored for more than five minutes at a time, but the implication seems to have eluded the people supposed to be looking after him.  He was routinely left for ‘fifteen to twenty minutes’ in the morning for ‘private time’ (masturbation).  Danny’s Mencap ‘independent living placement’ (rebadged residential home) had installed a seizure monitor in the form of a movement-detector placed under his mattress, linked to a remote audible alarm.  But when it went off during Danny’s ‘private times’, this appears to have been assumed to be due to his movements while masturbating, rather than to any resulting seizure activity.  It also ‘was going off frequently throughout the night’, according to John Andrews, the waking night worker who gave evidence yesterday.  He reported the fact to his managers.

The alarm, appropriately for an emergency warning, was loud: “Like a fire alarm,” according to Angela Stone, one of the day workers.  Inconveniently loud.  “It was going off disturbing everyone.” said Ms. Stone.
So the engineers were called to ‘tweak’ the monitor.
“It was a case of getting the settings right,” explained Ms Stone, adding, “I don’t know where I’ve got the word settings from.”
That suggested that some, at least, of the people working with Danny misunderstood the gravity of his condition.
Ms Stone was categorical: “I felt <bed> was a safe place for Danny, we had the mat, we knew that worked, he wasn’t seriously epileptic.”
Myself, I can’t imagine in what universe repeated tonic-clonic seizures are considered ‘casual’ epilepsy.

There was no mention, yesterday, of what clinical advice, if any, was provided to the engineers to ensure the revised settings were still suitable to keep Danny safe, nor any mention of a medical opinion being sought about the ‘frequent’ alarms.  Tellingly, when Danny was found in bed, grey and not breathing, on the morning of his death, the forceful, rhythmic activity of cardio-pulmonary resuscitation did not trigger the system.
“It suddenly struck me after everything was over,” said Ms. Stone, “We’d not heard the alarm go off. I couldn’t get my head around why we hadn’t heard the alarm go off.”
In a gruesomely farcical passage, she described herself and her manager checking the alarm:
“So Rachel, the manager, and I went to Danny’s room to look at the mat, that was the first thing that occurred to us, something had happened, something was wrong. The mat was on, the light was green.  Rachel showed me how you had to move around in a certain way to set the alarm off, and the alarm went.”
“Who got on the bed?” asked the coroner.
“Rachel,” said Ms Stone.  “I didn’t have a clue how to do it.”
Nope. No clue.
Is it possible that the sensitivity of the mat’s ‘settings’ been so narrowed as to render the sensor useless for practical clinical purposes?

Jo Fannon, Danny’s 1:1 worker on the morning of his death seemed nearly as uninformed.
The Tozers’ barrister, Ben McCormack asked her, “You mentioned earlier that the only time you’d heard it was when he was having private time, was there any chance anyone would have turned it off?”
“No,” said Ms Fannon, “You’d never turn it off.”
“Had it ever been set off by someone sat on the bed talking to Danny?” asked Mr. McCormack.
“No,” said Ms. Fannon. “It required momentum.”
Mr. McCormack persisted.  “You mentioned it was changed, were you aware of the defects, what was wrong?”
“I wasn’t aware of the defects,” said Ms Fannon, “But it was replaced.”

I may have mentioned that G uses a number of machines.  They alarm from time to time.  If they do, I NEED to know why, in order to be sure that the action I take is appropriate and also to be aware for the future if there is a pattern of events.  If there is a pattern of events, I need to know the underlying causes: Is G unwell, or is there an intrinsic flaw in the tech?  Machines provide information.  Some do a limited amount of analysis for you, within human-defined parameters and algorithms.  They do NOT replace thinking, and they are absolutely pants at intuition and human empathy.  It’s more than regrettable that some people don’t seem so hot on these human functions either.

Now, we all know there are numpties who will take the battery out of their smoke alarm because their inability to master Toast-Making Without Charring means inconvenient decibel-levels.  But I was trying to imagine what staff would have done if a real fire alarm had gone off.  And I bet it wouldn’t have been to call out the engineers to modify the noise.

“Hi, Maple Avenue here, can you send out engineers to turn the fire alarm down? Keeps making a helluva racket. We want it so it only goes off if the fire moves in a certain way, with a bit of momentum.”

Quite apart from anything else, they’d have been as at risk as the residents of getting fried.  Because it would have been their lives on the line, and not just Danny’s, they’d  have dialled 999 for the Fire Brigade, straight away, no question.  So why were the engineers, not the emergency (medical) services, called for Danny?  Did he as an individual not matter?

It’s worse than alarming.  It’s terrifying.

Weatherwise.

Tags

intellectual disabilities, true stories, voices of disability, voluntary organisations

A tihirty-five mile trip at ungodly o’clock this Sunday morning, to an outdoor pursuits centre where Grenouille and friends from the disabled sports club were competing in the regional heats of a national competition.

“Lots of layers”, said G’s Papa, who was staying behind to keep Eldest company through AS science revision.  “And waterproofs, and take the golfing umbrellas for when you’re standing around. The forecast says bands of heavy rain.”

As we drove down the motorway, G asked, “Do you think it’s going to rain?”

“I don’t know, love.  I think it was sensible to pack all the waterproofs.  It does look a bit threatening, there’s some dark-grey clouds to the north-west, and as Papa said, the forecast is for rain”.  Under my hands, the car’s steering wheel vibrated as a buffeting side-wind tried to push us into the outside lane.

“I don’t believe the forecast”, said G, in a tone of bright hope.  “Half the time they say something and it turns out totally different.  “

“Is that right?” I said, rather vaguely, one eye on an articulated lorry wobbling to my left, and the other checking out the Beamer roaring up behind me as though keen to get close enough to check whether the inside of my exhaust pipe had been cleaned recently.

G snorted derisively.   In a voice dripping with scorn: “I don’t think the weather people know what they’re talking about.  I’m not listening to any of that old nonsense.”

To keep the wind out, we wore our waterproofs all day; but it never rained.

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 arrangement, for equal voices, of a canon by William Byrd; 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.

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.