Common trials: The goblin and the ogres.

Tags

#107days, Down syndrome, local authority

I was seven when we moved from the town to the country.  I missed my best friend Ria, but village life offered many compensations and soon I had far too much going on for her absence to make a huge gap in my days.  My favourite new activity was ballet classes – white dress, pink sash and hairband, ribboned pink leather practice-shoes, lining up heavy wooden high-backed chairs in the Village Hall for an impromptu barre – which is where I met Vicky.

Vicky’s Mum and mine agreed to take it in turns to sit through the lessons and walk us the mile home.  One week we would be accompanied by my Mum with my little sister in the pushchair, and the next it would be Vicky’s Mum wheeling her sit-up-and-beg bike with Vicky’s little sister in the child seat behind the saddle. One sunny afternoon, Vicky’s sister had asked to get down, and was trotting along the pavement in front of us.   I said something about how little Naomi’s walking was coming on, and Vicky gave me a funny look.

“How old do you think my sister is?”

I thought about it.  Naomi was only slightly taller than my sister and didn’t speak as well as her, so… “Three?”

“Nope.  Ten.  She’s ten.  I’m the youngest in our family.”  I looked at Vicky walking gracefully, dancer-fashion, with her feet at ‘ten to two’: skinny as a twig and my height despite being nine months younger than I.  I looked at the rounded, stumpy figure of Naomi, trundling along towards home.  It didn’t make sense.  Ten?

“She’s a Mongol”, said Vicky.

This didn’t make sense either, and I said so.  Mongols were people who came from the steppe-lands between Russia and China, like the Huns in Peter Dickinson’s The Dancing Bear, not schoolfriends’ little big sisters.  Vicky laughed.  “Not a Mongol from Mongolia.  It’s just that her eyes look like a Mongolian person’s.”

I had never noticed.  “So why is she so little?”

Vicky shrugged.  “She just doesn’t grow.  She will never grow up – she will always have the mind of a child.  The doctors say she’ll be stuck at a mental age of two.  That’s why she doesn’t come to our school.  I don’t mind.  If she weren’t like she is, I wouldn’t be here.  Mum says she would have stopped at two kids, if Naomi had been all right”.

In later chats with my mother, Vicky’s Mum, a slightly brusque lady at the best of times, made no bones about her feelings for her middle child.  “She didn’t feed when she was born.  That enormous tongue of hers just lolled about, she couldn’t suckle.   I thought she would just quietly slip away in a week or two.  Would have been the best thing for everyone.  But there was this nursing sister on the ward who took her off and kept giving her bottles.  I could have slaughtered that nurse.  She had no idea of how much trouble she was going to cause me.”

I did not understand the more pragmatically infanticidal statements in this part of the conversation, but the tone in conjunction with the body language gave me an impression of complex feelings of hurt, resentment, guilt and anger behind the words, so I picked out what seemed like a safer topic.  “Naomi has a big tongue?”  Another thing I hadn’t noticed.

“Oh yes.  One of the reasons she doesn’t talk properly.  That and her deafness.  When she was a baby, her tongue hung out of her mouth.  Looked awful.  I thought, that nurse may have landed me with a defective baby to bring up, but I was damned if it was going to look an idiot as well as be one.  Every time that tongue poked out, I poked it back in again.  She got the idea eventually.”

Naomi didn’t start school until she was ten or so.  Prior to that, she had been one of the ‘deemed ineducable’ children, given no schooling or educational therapies.  Unsurprisingly, she never learned to read or write, and her speech remained difficult to follow if you weren’t used to it.  But she got into a routine of day-centre, activities, outings with peers and support workers.  She moved into a Mencap group supported living facility in her early thirties, and was very happy there.

After fifteen or so years, the prevailing wind in social care swung round against such housing, funding arrangements changed, the facility was closed and Naomi was ‘decanted’ into a smaller establishment.  She missed her friends; the support in the new place was reduced; she found it difficult to stick to a sensible routine without help and prompts; and she drove the other residents half-crazy by having her television on at full volume in the wee sma’ hours, so that she could watch – and hear – it in bed, without having to wear her deaf-aids.  The new place eventually evicted her.  She went into an adult foster care placement, then another, then a 24-hour supported place.  Each time it was further from home and away from the people and places she was familiar with.  Vicky has spent, and still spends, substantial chunks of time negotiating with funding authorities, care providers, and clinicians, trying to make marginal improvements to her sister’s situation.

---

Vicky and I started our own families in the same year.  She had every antenatal test under the sun for each of her pregnancies, because after a lifetime of watching her sister and her family struggle, she didn’t want to have to do it over again.  I didn’t have any tests apart from 20-week scans, because my partner and I had decided that we were going to welcome whichever babies came to share our lives.  It was just as well that we had had that conversation in advance, since second time round Grenouille showed up, with a non-Down’s genetic rearrangement and rather more health problems than Naomi ever had.  Eldest was still a slightly shaky conversationalist when Grenouille was a baby, but loved big words and, shooting for ‘sibling’, informed a relative that “Mummy has had my goblin”.  It seemed inadvertently apt for my little changeling.

But from starting out in Naomi’s same second-sibling position, Grenouille has had a very different experience, although I can’t guarantee that it won’t end up in a similarly miserable place.  Loved to bits by all the family and adored by Eldest, treated with patience and to welkin-ringing cheers for every achievement, Grenouille has flourished.  On the official side, there were early-intervention physios, OTs and speech therapists; a Portage worker, then an Early Years peripatetic teacher; Makaton sign-language from babyhood to pave the way for the spoken language that didn’t emerge until age five or six; a one-to-one aide at nursery and dedicated TA support at school; a Statement of Special Educational Needs; a differentiated curriculum to fit a spiky ability profile.  The therapists and school staff have all been wonderful (it helps, of course, that Grenouille deploys an irresistibly charming personality) and with a – very – few notably regrettable exceptions, so have the healthcare people.  I can’t help but speculate how different Naomi’s life would have been, given similar chances and supports.

The Local Authorities, on the other hand (four and counting…), have been pretty uniformly awful.  I have written reams of letters, amassed lever arch files stuffed to bursting with documentation, made countless telephone calls, sat through a five-hour SEND Tribunal, had to argue annually over support hours, educational therapies, transport provision and reasonable adjustments to allow time to access extra-curricular activities.  I have done a complete research project on how to apply to the High Court for Judicial Review – although (thankfully, since legal action ain’t cheap) so far the mere threat of Judicial Review has sufficed.  The idea that responsibility for Grenouille’s educational future will transfer to this bunch of incompetents at age 16,  is too hideous to contemplate, never mind that they might be able to cut us, Grenouille’s family, out of the loop altogether once Grenouille hits blow-out-eighteen-candles day.  The Authority staff don’t understand Grenouille, they don’t understand Grenouille’s condition or needs, they don’t seem to understand the legal weight of some of their responsibilities.  Worst of all, they give every indication of not having the faintest conception of the extent of their own ignorance, nor even of the possibility that they might be ignorant in some respects.  They get things wrong, and no sooner have they been set to rights about whatever-it-is, than they go and screw up on the next thing.  I don’t know whether the awfulness of local authorities is a continuing echo of the attitudes that disabled Naomi even more than her extra 21st chromosome, or whether the dire attitudes we have encountered in relation to Grenouille have been specially new-minted, all shiny for the 21st century; but either way they are unacceptable.

It’s debatable whether Grenouille is a goblin, but some of the statutory authorities have the definite appearance of ogres.

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Who in mortal chains

Tags

#justiceforLB, Connor Sparrowhawk, corporate manslaughter

Where has the rage gone?  It’s still there, but seems to have transformed itself into a terrible calm, as though I had gone right through Dante’s icy lowest circle of Hell and discovered the place, the unreal universe, where there are temperatures colder than absolute zero and water doesn’t merely freeze, it anti-boils.

Backing up a little, this blog was originally set up because of the #JusticeforLB campaign.  Since Connor Sparrowhawk, known as LB, drowned in an NHS bath in Oxford’s Slade House Assessment and Treatment Unit, his family has, through magnificently relentless digging, discovered that:

• the ‘care’ given at the Unit was inadequate to the point of negligence;
• there was a de facto four monkeys policy – hear, say, see and do nothing;
• the care offered for Connor after his death continued to be inadequate: the official post-mortem did not examine the possibility of epileptic activity leading to submersion;
• the organisation of which Slade House was part, Southern Health NHS Foundation Trust, was prepared to make public statements exculpating itself, on the basis of no facts;
• Southern Health was not prepared properly to investigate the circumstances of Connor’s death until it was forced to do so;
• Southern Health was prepared to make self-exculpatory statements that distorted or plain contradicted the facts that emerged.

So far, so bad.  However, having ascended the (scavengers’ and parasites’) food chain from staff to management to provider, Connor’s family have moved on to the next link.  Southern Health was not the final NHS arbiter of the ‘services’ provided by Slade House.  The services required were detailed in a contract that Southern Health was awarded by Oxfordshire Clinical Commissioning Group, with which latter body the responsibility for specifying the services rests.  As the contract-awarding body, the CCG is also responsible for monitoring the contract’s performance.  It hasn’t made any formal comment about this in the nearly nine months since Connor died.

Giving the CCG the benefit of the doubt, it might have been plausible (though in no way excusable) that the commissioners had been fooled by the relentless PR-spin and management-speak of Southern Health.  That the commissioners were well-meaning bumblers who lacked the capacity to realise that they were a weak link in the chain of safe healthcare.

No more.  In the last week it has come to light that in 2013, a working group from the Winterbourne View Joint Improvement Programme went to look at examples of Assessment and Treatment Units which were documented as centres of good practice. One of the recommended centres was – Slade House.  The WVJIP working group visited in company with an Oxfordshire CCG commissioner and everybody was horrified to find that actual practice was awful, nothing like the purported (documented) practice.  The commissioner seemed as shocked as anybody.

And when was the WVJIP visit made?  In January 2013, two months before Connor’s admission to Slade House, and six months before he died there.  The commissioner knew, knew, had seen with his or her own eyes, that the ‘service’ offered through the Unit was atrocious.  Had even, apparently, remarked that it just showed how important it was to visit in person rather than relying on reports.  Yet it seems that the awfulness was insufficient to merit anything being done about it.

Why?  Well, here’s an email from the back-end of 2013, sent by one of the commissioners: “It is evident however that the quality of the service at STATT, which had been person centred at the point of transfer to Southern Health in December 2012, deteriorated significantly over the period of time in question and I am very sorry that what was held to be an example of good practice had such a poor report from CQC.”  CQC (Care Quality Commission) visited in September 2013, by which time the personal knowledge of the ‘deterioration’ acquired during the WVJIP visit was 9 months old.  The email continues: “I’m afraid we have to hold Southern Health responsible for that deterioration although we don’t say so publicly as we don’t want to knock confidence in such a large provider.”

Now, I think I’ve proved I’m as much up for giving Southern Health a damn’ good kicking as the next reasonable person, but that assertion about responsibility doesn’t fall within my definition of ‘reasonable’.  Even Southern Health, surely, would have been hard-put to it to cause a commissioner-shocking level of deterioration between December 2012 and January 2013?  Mr. Commissioner can’t shuck off his organisation’s responsibility that easily.  Another thing: Oxfordshire CCG have been taking credit to themselves for trying to set up contracts where payment depends on the outcome for patients rather than on having a notional level of service available. Not “knock(ing) confidence in … a provider”, however “large“, is, or bloody well should be, an irrelevance. If the email fairly represents the limit of the extent to which Oxon CCG – the flagbearer for outcome-dependent commissioning – is prepared to fight the vested interests of providers, then there’s no hope of change.

Worse yet, the CCG is not the last organisation deploying silence in the hope that it will Teflonise them against blame.  Not a peep from the Adult Safeguarding Board, nary a syllable from the Adult Social Care people who should have provided the community care that would have allowed Connor to return to the safety of home – indeed, could have prevented the crisis that took him away from home in the first place.

So here’s the thing.  I generally favour the cock-up theory of disasters.  But such widespread collusion in silence and evasion of responsibility over the death of Connor, a person with learning disabilities and complex needs, looks remarkably like conspiracy.  Something that permeates the whole health/care system, and in effect decides the life and death of people based on their perceived economic value (or cost).  A chain of rotten links that is doing its best to strangle and crush Connor’s family, like Laocoön’s serpents*.  Not Death by indifference, not 74 Deaths and counting,  not even the killer 1200 avoidable deaths, but an unspoken policy of covert genocide dressed in rags of euthanasia.

From the day of Connor’s death, it seemed likely that negligence was a factor.  I felt all along that a prosecution for corporate manslaughter should follow if negligence could be proved.  But when negligence is so deliberate, so entrenched, is manslaughter really appropriate?  Oh, legally, legally, manslaughter is the severest charge available.  But morally?  Looks to me terrifyingly like murder.

* (Laocoön – for anybody who’s forgotten the story and can’t be annoyed just now to Google it – was killed by constrictor snakes, along with his sons, as punishment for speaking an inconvenient truth.  He was, as it happens, a priest of Poseidon, the god of the watery realm.  How apposite.)

Who in power

Tags

#justiceforLB, (un)accountability, Connor Sparrowhawk

A preventable death.

Who should be out of power now?

Who in water – Serendipity

Tags

#107days, #justiceforLB

I’ve volunteered/been asked to contribute to Day 28 of #107days (April 16), which is going to be a collection of ‘Drops of Brilliance’ – the little things people do, unasked and unprompted, that make the difference between care and don’t-care.  I’ve got my opening story ready (no, you are not getting a preview, sorry) and am working on the illustrations for it, but I wanted a picture of shimmering raindrops for the header.

Found a fabulous picture of crystal-clear drops on a shamrock, whose heart-shaped leaves seemed perfect both for the subject and for Connor’s love of Ireland, so off I went to track down the copyright owner and beg permission to use the photo.

She was happy to grant it and – or that should perhaps be because – guess what?   She teaches secondary-age dudes with extra learning needs, including some on the autism spectrum.  Check out the credits in about three weeks at Justice for LB.

Tim, the tumour and tragedy.

Tags

#107days

My riff on the nature of tragedy seems to have struck a few sparks – enough to flare briefly in the #Justicefor LB comment threads.  So today I am going to look at a life that contained the elements of true tragedy – one where the outcome was unavoidable despite everything that was done to fight against it.

Tim lived a few doors down the road from us; he was a year or two older than my younger brother.  He was a strikingly good-looking little boy, with a flop of nut-brown hair, strong features resembling his father’s and huge, beautiful, dark-brown eyes as clear and deep as peat pools.  His over-sized head on his little-boy’s body gave him an appearance of wisdom and maturity beyond his years.

Perhaps not all primary-age children are the same, but back then I think I generally took things as I found them.  As a very small child, of course, I thought that my immediate family’s way of doing things was The Only Way: that everybody had Readicut hooked rugs in front of the hearth; that all sitting-rooms had a coal fire, under which everybody’s father would put a tinfoil-covered enamel plate of potatoes or chestnuts to bake; that everyone’s doorstep tiles got a weekly going-over with Cardinal Red polish; that everybody had to walk along to the box outside the Telephone Exchange, with a handful of coppers and small silver, when they wanted to make a phone call.  The delusion didn’t last long.  Even visits to wider family, never mind beyond, showed that viable alternatives included polished parquet floors and fitted carpets; steps in grey concrete and beige stone; central heating or gas fires; and Bakelite telephones on a stand in the hallway.  None of my grandparents favoured my Dad’s camp-cookery style of cuisine; while my English granny fed us pressed ham, wafer-thin bread and butter and slices of raisin-studded fruit-cake presented on a cut-glass footed stand, my French gran’mère lobbed garlic by the handful into the rich, aromatic stews that she referred to as her ‘petits plats mijotés’, served cockles dressed with vinaigrette and had a pot of coffee instead of tea for breakfast.

By the time I was over five, I remember noticing differences, but not supposing that they were significant.   If I considered them at all, I think I had concluded that difference is what makes us unique – some people’s mothers wore spectacles or permed their hair; mine didn’t.  Some people liked to eat cake and sweet stuff at parties; I used to clean out the cheese footballs and Twiglets.  So the fact that Tim didn’t speak, but mostly just rode his trike and bestowed serene smiles on the world around him, neither puzzled nor bothered me.  It was simply the way he was. 

In any case, in all important respects, he was just the same as the rest of us.  He liked to join in games of tig, he loved curling up to have a story read to him, he looked like his Dad, squabbled from time to time with his big sister, and was the apple of his Mum’s eye.  I don’t know when his parents began to worry about his developmental delays and to seek explanations, but it’s safe to assume it was before we children began to realise that Tim’s running was getting more, not less, staggery, and well before he began to need a harness to keep him safely upright on the tricycle seat. Nor do I remember whether I asked a question about what was happening to Tim, or if my Mum decided it was time to explain, but I do remember sitting on the sofa while she told us, “Tim is ill.  He has a growth called a tumour inside his head.  You know how he has been wobblier on his feet lately?  The tumour in his head is interfering with the part of his brain that tells his body how to move.  Yes, the doctors are trying to find out a way to make him well again, but they are not sure what to do.  No, they don’t think there is any medicine that can help.  He may need an operation, but even that might not make him better.  No, it’s not the catching sort of illness.  We just need to be a bit careful because we don’t want to knock him over while he’s wobbly, and we need to be thoughtful because Tim will probably get tired quickly while he’s ill.”

Further investigations showed there was nothing that the doctors could do.   His parents had to accept they would have to say goodbye to him.  After that, they didn’t waste energy on useless pursuit of chimeric treatments.  Instead, they focussed on filling his life and their family life with friends and laughter and the simple fun things.   Even when the growth of the tumour robbed Tim of movement and made him sleep nearly all day, we were still welcomed to visit and talk to him.  His parents sought help – not easy to find, forty years ago – to prepare themselves, his sister and his friends for what was to come.

In a certain sense, all lives are the same length.  They last from birth to death and it is what happens in the space between that gives them worth.  It would be easy to call Tim’s short life a tragedy and a waste, since he never got the chance to shape its direction for himself, accomplish anything specifically recognisable or leave any tangible legacy. But accepting an inevitable outcome is not the same as acquiescing in a rubbish journey to that unvoidable end.  There is almost always more than one way to accomplish a task, and one of those ways will be better than the alternatives.  You can take elements of potential tragedy and remake them into something else, even if you can’t change everything.

Although what Tim’s family accomplished still shines down the years as a jewel of happiness, love and care, I’m loath to call what was made of his life ‘a triumph’.  It sounds too glib. Yes, his family did the most they could for him, yet the ‘most’ was simultaneously the least. All they did – that commonplace, superlative, ‘all’, was –  the right thing by him.

Opportunities, Knocked.

Tags

#107days, #justiceforLB

Needed to take a break from indignation (aka absolutelyfuckingfurious) mode.  Listened to the Sting Radio show from 18 March, with its playlist selected to celebrate Connor Sparrowhawk’s life, and explanations from Connor’s mother about why particular tracks were significant to and for him.  I hope she won’t mind me repeating a couple of the stories here.  I would never want to be taking Connor’s stories over and remaking them in a way that distorts the reality of him; far too much of that has gone on already.  These ones give such a wonderfully powerful impression of Connor and his legendary personality, that I feel they bear much repetition and deserve the widest possible audience.  So no-one forgets just how awesome a dude LB was and still is.

Naturally, one of the highlights of the show was The Divine Comedy’s ‘National Express’, accompanied by a description of the ConnorCo bus company, the conception of which had been a lifetime’s work for Connor, and whose achievement remained his lifelong (vocational) aspiration.  By the sounds of it, Connor wasn’t a man to dream small, nor to skimp on the proper finishing of important matters; not only had he got a name for his bus company, but he had the fine details of its routes and timetables, and the staff scheduling to cover them, all worked out.

Connor’s high ambitions weren’t limited to the earning-a-living side of things, either.  His standards for his personal life were equally exacting.  He wanted a girlfriend, a pretty girl with brown eyes.  For a while, he had a bit of a crush on  the model Rosie Huntington-Whiteley, and carried a black-and-white snap of her around with him.

But then he saw a colour photo of her, realised she had blue eyes, and promptly threw her picture away.  Sorry, Rosie, gorgeous as you are, you just weren’t quite good enough for Connor…

He fell in love with a girl he saw on a cross-Channel ferry and although he never met her again, he always, says his mother, carried her in his heart.  For LB, for his belle-idéale aux yeux marrons, for hopes and dreams and love and directness and the joys of living that pounced from unexpected directions, a song that wasn’t on the Sting Radio playlist.

Sloven-spun shitespeak

Tags

#107days, #justiceforLB

Following my disaster last Friday, I spent a four-hour pre-weekend train journey in a crowded and uncomfortable cross-country carriage, retrieving from my memory, and retyping as much as I could of my reactions to the agenda/CEO report prepared for next Friday’s Southern Health Trust Board meeting (28/03/14 – although the agenda claims, confusingly, that this is a Thursday).

I’m going to be VERY interested in the minutes of that meeting, whenever it is*.  Here’s why:

Paragraph 1.1 of the CEO’s report mentions that the ‘external, independent review that the Trust commissioned’ into Connor Sparrowhawk’s death,  ‘was published on Monday 24 February 2014′ – neatly glossing over the facts that (a) the report wasn’t commissioned until the Trust had no option but to make such a report, (b) it wasn’t completed within anything resembling an appropriate timeframe (c) the Trust did everything possible to exclude Connor’s family from the investigation process, forcing them to fund expensive legal representation to enable family advocacy for Connor and (d) the Trust tried right up until the last gasp to prevent or delay publication of the report, constantly moving the goalposts.

It also characterises Connor’s death as ‘tragic’; and that is a crassly unacceptable evasion of responsibility.  I’m going to have to assume that English Literature didn’t feature in the education of Sloven’s Chief Executive, because, as every GCSE student of Shakespeare knows, the essence of tragedy is that the tragic event is fated.  Inevitable, written in the stars, unavoidable.  An unbreakable thread of destiny created by Clotho, allotted by Lachesis, enforced by Atropos, beyond mortal control.  Not the case here.  Connor’s death was preventable and was due to human malignity and carelessness, not to divine intervention.  Connor’s death wasn’t a tragedy, but something far worse.  It was a disaster; a preventable disaster.  That’s not a tragedy, that’s an outrage.

1.2. The Trust immediately indicated publicly that it fully accepted all the findings of the report and once again apologised to Connor’s family and friends for its failings in respect of Connor’s death.

Mmn, shall we just forget that until publication was forced on the Trust, it determinedly peddled the line that there was nothing to get fashed about; no prob, Bob; just natural causes?  No, we won’t.  It must have been bloody obvious, from fairly early on, which way the report was going to have to go; why not ‘fess up as soon as the problem becomes visible, instead of waiting until everyone can see that you don’t have a leg to stand on?

Let’s also give that ‘once again’ a round of sarcastic applause, too, with its overtones of “We’d already bust a gut to say sorry, how much more do these unreasonable people want from us, ffs?”  After all, Connor’s family and friends have only lost one person.  There’s only so much sorry-saying anybody could do about that, isn’t there?

1.3. Connor Sparrowhawk .. was found submerged in the bath on the unit and died in hospital shortly afterwards. Post-mortem findings showed that he died as a result of drowning, likely to have been caused by an epileptic seizure.

Connor was pronounced dead at the hospital, after artificial life-support was switched off.  But he had already died in the unit.  After he was removed from the bath, he could not be revived.  He did not breathe independently, his heart had stopped beating spontaneously.

The post-mortem that showed the epilepsy findings was not the initial, official one.  The crucial information came from a subsequent PM requested by the family.  Within a few days of Connor’s death, they were having to read up on post-mortems involving epilepsy, spot missed procedures, arrange for omissions to be rectified, and appoint legal representatives to ensure that this time, things were done properly.  The Trust, meanwhile, was stating in public and in print that Connor had died of ‘natural causes’.  Drowning is not a natural death.

Finally, the drowning was not ’caused by’ the epileptic seizure.  That’s an elision of cause and effect to exculpate the Unit.  The presumed seizure is likely what caused Connor to become submerged, but that submersion would not have drowned him  had there been someone there to pull him above the surface or drain the water away immediately.  There should have been someone there.  Connor’s death by drowning was caused by a failure properly to care for him and his epilepsy, not by the epilepsy per se.

1.4. Since publication of the independent investigation report, the Trust has sought to be open, transparent and candid about this matter and has been open to approaches by the media.

Yup, transparent to the tune of  maintaining radio silence for the best part of a week (including temporarily closing down its Twitter account and barring #JusticeforLB) after the report came out, only have its staff primed to spout nothing but evasive PR gobbledegook when interviews could no longer be avoided.  The only thing that came across as sincere was the unfortunate phrase of the Trust’s Chief Medical Officer, saying that she and her colleagues wanted to help Connor’s mother to ‘move on’.  As in, ‘move on, nothing to see here’, huh?  Betcha do.  Bad luck for Sloven that it was never going to happen.

And Sloven needn’t kid themselves that their previous seven-and-a-half months of obfuscation, opacity and secrecy went unremarked, or will be either forgotten or forgiven.

1.5. Following Connor’s death the Trust has, of course, made a number of improvements to services

Of course?  OF COURSE?  So ‘of course’ that when the Care Quality Commission inspected Slade House, eight weeks after Connor’s death, it failed on all ten areas inspected, and the only change to practice seemed to be that staff now ‘discreetly observed’ bathing patients (in line with some unelucidated, and apparently undocumented protocol)?  Absolutely no mucking ‘of course’ about it.  Bloody shysters.

1.6. In addition the Trust has been in contact with Connor’s parents.

Mostly, let it be noted, to say some variation of ‘No’ to them or put pressure on them to stop creating trouble for the Trust.

Staff expressed their condolences at the time of Connor’s death and the Trust has made contact with Connor’s mother (Sara Ryan) on a number of occasions.

As far as anyone knows, Connor’s mother has never invited the Trust, or otherwise given them permission, to address her or speak about her using her given name.  Calling someone by their given name rather than their title and surname is familiar, in this case disrespectfully familiar.  Sloven should have extended her the courtesy of using her formal appellation of Dr. Ryan.

The Trust repeatedly apologised for its failings in respect of Connor’s death and sought to meet with Sara Ryan but to date Ms Ryan has declined all invitations to meet with the Trust Chief Executive or indeed any other Trust representative.

That’s Dr. Ryan’s privilege.  She is under no obligation to exculpate the Trust, assist it to improve, or indeed do anything for anybody unless she feels like it.  No blame attaches to Dr. Ryan for preferring to avoid representatives of the organisation that not only failed to keep her son alive, but subsequently refused to communicate amicably with her until talk became advantageous for the covering of the organisation’s own arse.

1.7. We are very keen to meet with and engage with Ms Ryan. We understand that she is currently going through a painful, grieving process.

Personally, I’d question the level of understanding when a report-writer considers that the word ‘painful’ is a necessary, rather than superfluous, adjunct to the phrase ‘grieving process’.  And ‘process’ has an aura of finiteness about it.  But nobody ever comes to the end of grieving for the death of a dearly loved person.  You don’t at some point definitively emerge from grief, all shiny and new like a butterfly leaving its chrysalis.  After a considerable lapse of time, a person may manage to move away from their grief for a while, at intervals, but the pull of loss always, always brings one back around again.  The loss becomes a centre around which the rest of life revolves, the focal point of the locus of the future.  Loss acts like the central star in a solar system of grief.  Just as comets, however far-travelling, cannot escape the gravitational pull of the sun, so a grieving person never leaves their loss behind.  Understand that.

On the basis of professional advice we have decided that it would be unhelpful to seek to engage with Sara through social media channels so we will continue to seek a face to face meeting whenever she feels that is appropriate and helpful.

Now, given the healthcare context of this report,  that phrase ‘professional advice’ has a reassuring, doctorly sound to it, doesn’t it?  A flavour of first do no harm, patient’s or client’s best interest, informed decision-making?  Wrong.  This advice comes from a legal professional and the best interests are not those of Connor’s family.  The advice is not designed to be helpful to those missing and mourning him.  It is a legal opinion, aimed at protecting Sloven from further exposing their shiteness to public view.

But note that juxtaposition of ‘professional advice’ with another (uninvited) use of Connor’s mother’s given name.  It would be minimally courteous to use the mode of address to which she is entitled as a senior academic.  Calling her by her given name alone is worse than patronising here, it’s infantilising.  It gives the impression that that a healthcare professional’s opinion has been sought as to Dr Ryan’s psychological situation and it has been discovered that she is too immature and fragile with grief to cope.  (Any mental health professional who wanted and merited to keep their licence to practise would refuse to disclose such an opinion in such circumstances, even if they felt themselves in a position to have formed it in the first place).

It  never happened.  The ‘professional’ opinion is again a legal/PR one, that social media engagement is not helpful to the Trust.  But it’s left a monstrously false impression that Connor’s mother has been certified a grief-maddened, unstable nutcase, shouting randomly at strangers as she staggers through the social-media marketplace.

The apotheosis of shitespeak.

1.8. Meanwhile, I would once again wish to express my deepest condolences to Connor’s family and friends and to say how sorry I am that we failed Connor.

Yeah, yeah.  Weren’t so sorry when you thought you would get away with keeping it quiet, were you?

1.9. The Trust began an important journey when it took over learning disability services that had previously been delivered by the Ridgeway Trust. 

Then why the blue blistering blazes didn’t Sloven notice when Slade House set off on its ‘journey’ at a full 180 degrees to the required direction of travel?  Under Ridgeway Trust management, the Unit was by all accounts no shining beacon of good practice, but at least it had begun improving how it sought and recorded family carers’ information, following a previous untoward incident.  Why was that ‘learning’ not preserved and built upon?

We clearly have more to do to improve these services

What can anyone say, except, “No shit, Sherlock”?  (Apart, maybe, from “No fucking shit, Sherlock.”?)

and our overall plan for the modernisation of Learning Disability care for the people of Oxfordshire and Buckinghamshire is covered elsewhere on the agenda.

I had begun deconstructing this part of the agenda as well, but got so bogged down in a morass of ‘key activities and deliverables’, ‘additional external resource’, ‘operational and clinical leadership’ (what?? where?) ‘alternative recruitment and retention incentives’ ‘triangulation’, ‘LD pathways’ and ‘agency fill rates’ that I decided that I had neither time nor will-to-live-serum enough to get me to the end of it.

Read it for yourself, if you think you can (and you’ll be a better woman than I am, Gunga Din), here.

Two brief final observations:

Firstly, nowhere in all 52 pages of the agenda, looked I never so hard, did I find a sentence saying anything remotely like, ‘By such-and-such a date, we will have put in place an admissions procedure that will prompt admitting staff to seek full information on a new patient’s medical conditions, treatments, day-to-day care, communication needs and relevant information as listed at… from family or other usual carers, as well as from treating Health and involved Social Care professionals.’  (That would be a S.M.A.R.T undertaking – remember SMART?  From Management-speak for Beginners?)

Secondly, in Section 10, the section on Learning Disabilities, there are three paragraphs.
The first announces, in a welter of acronyms,  that the ‘(LD) plan’ will be presented at the meeting.
The second details concerns about staffing.
The third is about the ‘financial underachievement’ as ‘a result of quality issues and mitigation plans in the LD Services provided in Oxford, Swindon, Wiltshire and Buckinghamshire’  that ‘creates a significant risk for the Trust’.

Now, which of those three items would you consider ought to be the most important and therefore merit the longest paragraph?  Hmmn?  And which do you think actually is the longest?
Want a clue?

(It isn’t 10.1.  Or 10.2.)

* Turns out the meeting was over before I posted this – it actually took place on Tuesday 25 March 2014.  Any members of the public wishing to exercise their right to attend, and relying on the information published on Sloven’s website, would have arrived two or three days too late.  Very, very poor, Slove-chaps.  But par for the course, I suppose.

High ordeals: Less than

Tags

#107days

I do not remember any children with special educational needs in my town-centre infant school.  It was the nineteen-sixties.  Children with physical and sensory disabilities were sent to ‘special schools’, while children with intellectual disabilities were officially deemed ‘ineducable’.  If they were not in a residential institution, they stayed at home with their mothers.

My junior school was a C of E village primary, having a single-storey Victorian Gothic main block, with the original large schoolroom, now designated the ‘small hall’, in the centre.  Around it, like petals on a lopsided flower, spread three high-windowed classrooms and two cloakrooms, with a suite of tiny offices and staffroom occupying the space that would otherwise have been a fourth classroom.

An Infants’ Department squatted in a separate 1920’s block, tucked away round a corner at the back of the ‘little playground’, and on the far side of the ‘big playground’ was the ‘big’ hall (cum-gym-cum-dining-room): 1960’s system-built, with a kitchen at one end of it.  On the west side of the big playground was the Top Classroom, a separate single room under a double-pitched roof, with its own cloakroom and lavatories.

Behind the Top Classroom was the netball court, and beyond that was ‘the field’ – a large football pitch bounded to the east by the road, to the south by the school, to the west by heathland, and to the north by a chain-link fence, behind which was another low, modern, pitched-roof building.  This was the ‘ESN’ unit, a newish construction in the same style as the Top Classroom, where the ‘Remedial’ children went.  ESN stood for Educationally Sub-Normal.  The 1970 Education (Handicapped Children) Act had given all children a right to an education provided by their Local Education Authority.

I do not ever remember seeing the ESN children in their playground, even on the most glorious summer lunchtimes when the pupils in my school were sprawled on the grass making daisy chains or simply bickering idly because it was too hot to run around.  Were they kept indoors all day, every day?  Their invisibility intensified the impression that they somehow still did not merit to be treated the same as everybody else.

The primary school Headmaster was an old-style martinet.  He looked, dressed and sounded like a retired wartime RAF officer: immaculate silver short-back-and-sides, neatly trimmed moustache, tweed suit and clipped speech that escalated to a bark if he spotted malefactors.  He certainly did not lack courage.  An adder was discovered one lunch-time, curled up in the suntrap at the foot of the Top Classroom’s south wall.  Mr. L seized a garden rake and as the snake struck out, jabbed with the metal tines, hit its head and killed it.  He then invited the watching crowd of children to observe the zig-zag pattern of scales that indicated that this was Vipera berus, the British Isles’ only venomous snake, used the rakehead to estimate the length (“I’d say those tines are about an inch apart, wouldn’t you?  Rake fits in twice… say, fourteen inches.”) and thus the age of the snake, and gave us a brief outline of the creature’s lifecycle and habits (“It’ll have come in from the heathland”).

He was a severe disciplinarian.  In a cupboard in his office resided a whippy bamboo cane, which was produced from time to time for the sanctioning of boys caught fighting or ‘picking on’ smaller children.  (Although some of them could, on occasion, be just as viciously violent as their male counterparts, girls were mysteriously exempt from this form of punishment).

One morning, the Headmaster’s assembly admonitions included the information that the school was to be joined by a new boy who was delicate and to be treated with especial care, owing to his having undergone fourteen operations.  Such a child today would probably be given full-time 1:1 support to ensure his safety, but it seemed like nobody had thought of what extra help this new boy might need to ward off the many bullies.  D arrived the following week.  Looking back, I am pretty certain that his disabilities were due to a genetic condition, perhaps a chromosomal disorder.

At the time, what I noticed was that he had low-set round ears that stuck out at right-angles to his head and which, taken together with his long upper lip and short nose, gave his features a slight but definite simian cast.  He was promptly dubbed ‘chimp-face’ by the bullies.  D’s speech was indistinct and his handwriting was noticeably shaky, straggly and slow.  He was spindly-limbed, his body was asymmetric, and his general physical co-ordination was poor.  Here, concluded the bullies, gleefully, was someone who was not capable of running away or hitting back, and who would be unable report in detail anything that happened to him.  From the first day, the big boys’ gang declared open season on him, and the Headmaster’s injunctions notwithstanding, he was subjected to merciless physical bullying.  Changing for PE, his abdomen was seen to be criss-crossed with purplish scars – the legacy of the fourteen surgeries – and it became a competition amongst the most thuggish to see who could kick D hardest in the belly.  On his last day in the school, he had been felled in the midst of a knot of boys, the better for them to take scientific aim before putting the boot in.

Someone ran to fetch the Headmaster, who arrived like a whirlwind of the wrath of God to carry the semi-conscious child to the office, whence D departed in an ambulance, never to return.  The Headmaster did return, and disappeared again, this time dragging the responsible boys with him.  All were given the cane and some were subsequently expelled.  Rumour said that the kicking had caused D to have an ‘abdominal rupture’ and that he was in hospital for some time.  I glimpsed him once thereafter, climbing out of a minibus and being escorted through the gates of the ESN unit.

Grenouille has, thankfully, never experienced such bullying.  Forty years later, school inclusion of pupils with disabilities is widespread and generally well-managed.  School staff working with G have always been keen to get themselves well briefed in advance on G’s capabilities and limitations so they can work with and around them.  The typical children in G’s schools have been helped and encouraged to think of G as someone just like themselves who happens to need some extra help.  On the one occasion that I am aware of when a mainstream child said something unkind to G, a more verbally gifted friend told the bully where to go, before fetching a Teaching Assistant.

Still, I don’t think the attitude that people with disabilities are ‘subnormal’, even subhuman, lies far beneath the surface in some, perhaps even many, places.  Eldest has had to endure disparaging remarks about having a ‘spaz’ or ‘retard’ sibling – although when this was reported to school, the teaching staff were horrified, and the pupil responsible was severely reprimanded.

Officialdom cannot refuse all blame.  Despite careful phrasing in SSEN guidance about ‘strengths and needs’, the fact is that those who have disabilities are defined by deficit, as anyone who has ever filled in a DLA assessment form knows only too well.  People with disabilities are categorised, classified, and still viewed, as varying degrees of ‘less than’.

Who in water… downstream

Tags

#107days, #justiceforLB, Connor Sparrowhawk

July 4, 2013.  Connor Sparrowhawk, known as LB, had drowned in a hospital bath.

The worst had happened to Connor and you might think that that for Connor’s family, friends and other people around him, things couldn’t possibly get any bleaker; but you’d be wrong.  The distress that the people close to Connor felt in an already appalling situation, was intensified and multiplied by the rearguard actions of the people who had failed him.

The hospital, and the NHS Trust that controlled it, did everything possible to cover up the real reason for Connor’s death.  They labelled the drowning, ‘death by natural causes’.  They resisted all attempts by his family to clarify the circumstances that led to Connor’s death.  They did nothing to improve matters for the remaining inhabitants of the Unit where Connor died.  Not one of the other patients who witnessed the futile attempts to resuscitate Connor before his removal by ambulance to A&E, was offered help or counselling in coming to terms with it.  Their families were not informed or offered help in supporting the people still in hospital.

Eight weeks after Connor’s death, the section of the hospital in which he died failed on every single measurement of a Care Quality Commission inspection.  Not near-miss failures, either, some of them, but catastrophic failings that had the CQC inspectors so concerned that – against all standard practice – they went and bodily hauled the most senior people that they could find across from another building to see with their own eyes the unacceptable state of the Unit, so that the greatest dangers could begin to be remedied that same day .

The Trust has stalled, ducked, dived, PR-spun and outright lied in its attempts to evade responsibility.  Eventually, it reluctantly commissioned, and even more reluctantly released, an independent report into the circumstances of the drowning.  The report concluded clearly that Connor’s death was preventable.  The Trust’s next move was to try to hustle Connor’s still-grieving family into ‘moving on’ with platitudes about ‘lessons learned’.  It is even now putting out weaselly-worded documents  (Trust Board Meeting 25.03.2014 Agenda and Papers) that suggest that it is Connor’s family who are somehow preventing the healthcare professionals from ‘learning lessons’, by refusing to ‘engage’ appropriately with the Trust.

Actually, Connor’s family has made a reasoned and reasonable decision not to get sucked down into the Trust’s vortex of bad-faith meaninglessness.  Instead, they have taken their concerns up to the top of the NHS, to David Nicholson, the Chief Executive of NHS England, and to Norman Lamb, Minster of State at the Department of Health.

Having gone to the top, Connor’s family, along with others with a genuine interest in the lives of people with learning disabilities, are seeking to go wide.  They are building a campaign aimed not only at finding out the truth about Connor’s death and holding those responsible to account, but also at improving matters for Connor’s peers throughout the country.

You can join in at http://107daysofaction.wordpress.com/.  See you there.

Common trial: Interface failure.

Spent 3 hours carefully analysing the latest communiqué (Board meeting agenda and papers) from Southern Health.

Clicked the wrong button.  1,000 words vanished into the ether.  Don’t have time to rewrite.  Bugger.