7 Days, Take Two.

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The September 2016 #7DaysOfAction is cranking up.  From 7 dudes last time, the campaign is currently up to 35, and seeking as many more people and families as care to come forward.

The people who have come forward so far have been asked three questions:

  1. How did you come to be admitted to an ATU?
  2. Since when, or how long for if you’ve left?
  3. How far away from home were /are you?

Most people were admitted for reasons other than specific needs for assessment or treatment:

ATU Admission

Assessment and Treatment Units are supposed to be short-term placements to get a person who is having a wobble onto an even keel and ready to return to their place in the outside world.  Only one of the people spent less than six months in a Unit.  He did not, however, return to his place in the outside world.  After three-and-a-half months, he died in the said Unit, owing to neglect by Unit staff and management.

ATU Detention

About half the people in ATUs were taken a hundred miles or more from home.  Most shockingly, one currently-detained person’s family had been kept for three months in ignorance of his location and still did not know his whereabouts, so had no way to check on his welfare.  He has vanished into the system.

ATU Travel

Party Like It’s 1973.

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Today’s Times is suggesting that getting your Joan Collins on is ‘the ultimate Brexit antidote’.  Hah!  Not likely.  I remember 1973; and as the sort of child who spent a lot of time just watching, who was a precocious reader, devouring newsprint as well as books (and who would read the back of the cornflake packet in the absence of anything better), I remember a lot of things about 1973, some of which could be on their way round again, and the memories and prospects of which just add to the post-referendum gloom.

Party 1973 crop

Things like the three-day week and the power cuts that left us reliant on an oil lamp with a glass chimney for light and the sitting-room coal fire for heat.  Cigarette smoke hanging thick in every public venue.  Loon pants and men in platform shoes.  Crowded, grubby and ancient public transport vehicles: steamy and fuggily redolent of damp wool in the winter; baking hot and dusty-smelling in the summer.   The rattling wooden escalators and dim, yellowish light-bulbs of the Tube.  IRA bombs at King’s Cross and Euston stations.

And, menacingly resurgent in the last few days, the thing that I had thought would never dare to show its face in public again: racism.  The kid whose Dad had been a policeman in Rhodesia and who refused to sit next to a black kid in school, calling him a ‘son of Ham’.  The man in the drapery shop who took down rolls of butterscotch- and chocolate-coloured corduroy and asked how much yardage my mother wanted of the ‘n*gger-brown’.  Having it carefully explained to me, with reference to ‘Naught for Your Comfort’, why our family didn’t buy Cape fruit, marked out by its blue-and-white logo with the leaf-shapes above the stalk of the ‘p’.  A hand-written sign on a yellowing and dog-eared postcard, displayed behind the glass of a pub door, proclaiming in wonky capitals, “NO DOGS, NO BLACKS, NO IRISH”.

Still, in spite of cringeworthy performances like Cliff singing ‘Power to All Our Friends’, there was good music.  This song, an old favourite written in 1973 or early 1974, and sung here by the man who wrote it, may not exactly get the joint jumping, but I’d rather have this drop of authentic feeling from the time, than gallons of newly-distilled, synthetic party spirit.

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Here Come The Girls.

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Six weeks ago, I was wondering, “where are the girls?”.  A couple have emerged onto social media since.  Although neither is in exactly the same situation as the lads who featured in The ATU Scandal #7DaysofAction, I am noticing same old themes of waiting until a situation turns into a crisis, counterproductive provision, failures to keep safe, the dangers and indifference of total institutions, isolation, the powerlessness of loving families, the difficulties of leaving an ATU, financial skewing that makes it advantageous for mental-health provision to hang on to people and disincentivises Local Authorities from bringing them home, and terrible, all-pervading, stress and fear for inmates and families alike.

Sophie doesn’t have a learning disability, as far as I am aware, but she does have bipolar disorder.  She is currently in St. Andrew’s hospital in Northampton.  This hospital, a very large one headquartered on the old Northampton ‘lunatic asylum‘ site, is not actually part of the NHS; it is a private institution with charitable status that bids for NHS contracts.  Sophie’s family, who live in Middlesex, have concluded that the hospital is not suitable for Sophie.  According to the petition for her transfer, it’s making her life and her family’s life hell.  The family have tried everything they can think of to get her home, but “nothing works”.  Her family believe she is treated badly where she is and is not kept safe.  Sophie has managed to self harm on many occasions, sometimes very seriously.  Her family are ‘desperate’ to have her closer to home so that they can support her.  They say: “Sophie is 21, she is a beautiful, caring, lovely young lady who just wants to be with her family.  She suffers with bipolar but she is not a criminal, so she should not be locked away like a prisoner.  To be honest, prisoners have a better quality of life than Sophie does in St. Andrew’s.  She doesn’t receive basic human rights and is not kept safe.  We need her closer to her loving family.”

The second young lady is not in an ATU – yet.  Her name is Emily, she is 19 and profoundly disabled by her autism and learning disabilities.  She needs 24-hour, 3:1 care.  For the last few years, she has been living in a residential school with visits to her parents’ home in Shropshire, but in less than three weeks, when term ends, she will have aged out of the school system.  So far, she doesn’t have anyplace else to live either, despite her family’s long-running and increasingly frantic efforts to find her a home of her own with proper supports.

They have been through all the hoopla of trying to secure her a liveable income (which was initially denied) and a house.  They have been asking their Local Authority and Social Work departments for help and support, which has been in very short supply and seems mostly to have consisted of ‘signposting’ to providers.  Wrong boxes were ticked by official form-fillers, meaning that Emily has missed out on some potentially suitable houses.  Those which were offered are all unsuitable for one reason or another – too far from family, too small, too insecure.  The only currently empty property which, according to Emily’s swathe of professional therapeutic and medical reports, is suitable, is said to be in leasehold limbo between the Council and the Housing Association.  Apparently, it will not be made available to Emily anyway, because it is earmarked for adults returning from ATUs.  But if Emily doesn’t have somewhere of her own to live in two-and-a-half weeks’ time, she will end up in an ATU.  Her family have been told that, absent a home of her own, there will be no other options.

Let’s just think about that for a minute.  Emily’s education, health and social care professionals have known for nearly two decades that Emily will always need care and support.  Her 18th and 19th birthdays can have come as a surprise to no-one.  Yet there has been no forward planning for the end of her schooldays.  Unless someone does something very soon, Emily will be placed in a facility intended for (a) assessments (which have already been done – exhaustively), and (b) treatment (which she doesn’t need and which can’t help her since she has autism, not a mental illness).  She will be in uncongenial surroundings that will be very likely to exacerbate her difficulties with making sense of the world, and she probably will be subject to the forensic, carrot-and-stick, behaviour-modification-restraint-and-heavy-medication regimes that have left too many dudes in a terrible state; and the prospects of which have Emily’s mother in agonies of terrified apprehension.

Yesterday, whilst her father was travelling to visit yet another far-flung shoebox property remote from Emily’s family and home town, the car encountered a pothole that has left it inoperable due to suspension problems.  It’s not the only thing that is breaking down.  If Emily ends up in psychiatric care, I fear her Mum may just be driven to join her, as the strain is very obviously getting to within a whisker of being too much for her.

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Some Justice for LB.

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After a day’s intensive pre-trial mediation, Southern Health have finally, finally, formally acknowledged what they should have admitted from the start: that the Trust, its processes, procedures and policies in respect of staffing, training, communication, clinical history taking and safe provision were negligent; and that as a result, they caused Connor Sparrowhawk’s death, in breach of his Article 2 human right to life.  At last, no more ‘not us, guv’.  No more ‘alleged’.  It just won’t (white)wash any more.  The Trust further admits to breaching the Article 2 rights of Connor’s family, by the Trust failure to facilitate the required ‘effective and proper investigation’ into Connor’s death.

Connor’s family has been awarded a sum of money, a substantial sum that is nevertheless a fraction of the legal costs which the Trust splurged on mounting an offensive defence at Connor’s inquest; a sum which is probably just sufficient to cover his family’s own legal costs.

In the last paragraph, the Trust acknowledges that Connor’s mother, Dr. Sara Ryan has ‘conducted herself and the Justice for LB campaign in a dignified, fair and reasonable way’, and explicitly disowns any statements from its staff or their families to the contrary.

Not before time, there is a new dish of the day on the Sloven menu.

A cooked puff pastry pie on a plate with the words humble pie carved out in pastry on the top

What I want to know is, why wasn’t this statement (minus the financial settlement that would have had to be negotiated subsequently), the statement that was put out immediately after the end of Connor’s inquest on 16 October 2016?  Come to that, why wasn’t it the statement that was put out after the Verita report in February 2014?  Why has it taken nearly eight months to get from jury verdict to formal Southern Health admission, and then only under threat of a further, Human Rights-based, court case?

It seems reasonable to speculate that the change of mind and direction may have something to do with the change of Chairman, so maybe things Southern are, at last, moving in an unSlovenly direction.  However, although as part of the settlement, Southern Health has agreed to put the statement on its website for four weeks, it has done so in the sketchiest, most grudging form.  With (heavy sigh) yet more bloody-minded spin:

We have now been able to come to a successfully mediated settlement with Connor’s family, as detailed in the statement attached on the right hand side of this page.

‘successfully mediated’, forsooth, as though Sloven had been actively seeking a just settlement, against the resistance of Connor’s family!  Some <expletive deleted> success!  Can’t fault them for consistency: they never fail to disappoint.

Given that so many of the Trust’s previous specious-spin statements have remained on the website for years, it will be interesting to see if this one stays there past the 28-day period, and if so, for how long.

Whatever Southern chooses to do, I promise that the statement will remain available on this site for as long as the blog exists. As, I am sure, it will remain on the Justice for LB site and many others.

This is not, even yet, Justice for LB.  Beyond admissions, there is accountability.  Whether that involves proceedings for corporate manslaughter, for Health and Safety breaches, or under the Fit and Proper Persons Requirements, I and the other Justice for LB supporters continue to uphold Connor’s family to travel just as far down those routes as they want to go.

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Full Statement in PDF format here: 08 06 16 – CS – Mediated Statement

Slovestatement1large

Slovestatement2large

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A Better Mousetrap.

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Next stage on the independent-living-for-Grenouille travels, a visit to the Occupational Therapists’ Aladdin’s cave where they keep all their magical enabling equipment.  Oh, my life.

We were presented with a massive array of the severely functional, generally seeming to be taken from Utility Furniture design archives for the War Economy Standard.  Make-do-and-mend, nothing matching or co-ordinating, and all of it costing a fortune.

Perching stools with white tubing legs, black rubber feet and beige PVC seats. Hideous bath benches in white plastic that would render the bath unusable by the rest of the family.  Ugly white-enamelled grab rails that belong only in institutional bathrooms, not real homes.  Vinyl-covered ‘easy chairs’ in surgical-appliance-pink.

Kids’ walkers and wheelchairs these days come in funky metallic colours: burnt orange, scarlet, royal blue, magenta.  This lot was anaemic and made me feel about 80 just looking at it, although saying that, my 80-year-old mother would call all of it “too ugly to be given house-room”, and quite right too.  Why is specialist equipment for disabled adults reduced to the mere functional, with no thought for any aesthetics?  The ‘like it or lump it’ attitude inherent in the ‘design’ of these items is so depressing in its dismissive contempt.  How much effort would it take to make these things attractive, or simply inoffensive?  Yet no-one, it seems, can be bothered.

There were a few gems.  A magnetic, battery-operated tin-opener that loaded, locked and swivelled itself around the top of the can.  A natty ring-pull lever for canned drinks and baked-bean tins.  Frog-shaped silicone oven mitts.  Interestingly, these mostly came from a well-known kitchen supplies retailer that prides itself on espousing design values as well as functionality.

G’s particular kitchen ambition was to be able to make hot drinks.  We experimented with travel kettles, but even those are too heavy for weak, wobbly hands.  The OT showed us two varieties of a contraption called a ‘kettle tipper’.  I felt it was more of a ‘hideous Heath Robinson heartsink’.  You place your kettle on a platform that hangs like a mangled swingboat from a pair of large, clumsy, plastic or coated-wire A-frames, belt it in with fuzzy, dust-trapping Velco straps, and once the kettle’s boiled, you push a lever that swings the basket to tip the hot water out.  You have to track the arc of the swing with the cup, not a good idea for someone with spatial processing difficulties.

“Although!” said the OT, brightly, “If you stick your tipper to the kitchen top, you can make a marker-pen X where the cup needs to sit!”  That, I thought, is going to work really well on a polished black granite worktop; and besides, WTAF?  Would you expect to put glue and marker-pen X’s all over your kitchen just so’s you could use the appliances?  Of course you wouldn’t.  You’d expect appliances designed to be usable.

“I think it would take up rather too much room in our kitchen”, I said, striving for diplomacy.

The OT skipped over to some wire shelving.  “I’m afraid this is the only alternative”, she said, indicating a £70, three-litre tea-urn.  “Maybe not the best if space is at a premium?”

“No-o”, I said.  Grenouille, meanwhile, was edging towards the thin end of a tantrum: “Want to make my own tea!  My own tea!”

“We’ll have a think about it at home”, I said, ushering G towards the exit.  “Um, maybe do some measuring and see if we can fit it in”.

G groused for ten miles in the car, and ramped the whinge-offensive up to Defcon III when I turned into the carpark of our local discount supermarket.  “Why we stopping here?  You said we were going home to do measuring!”

“Yes, I know”, I said.  “But I need to get some tomatoes for tonight’s dinner.  I’ll only be two minutes, are you coming in?”

“I’m staying here”, said G, grumpily, switching on the radio.

I sped briskly down to the back of the store and grabbed the tomatoes.  On my way back towards the checkouts, I spotted something else I thought would come in handy, and picked that up too.   G gave me the stink-eye as I returned.  “Why’ve you got a big box?  You said you were just getting tomatoes!”

“Wait and see”, I said.  “You can unpack the big box at home”.

G unpacked and set up the contents of the box.  Suddenly, all was sunshine on Planet G.  “Thanks, Mum, you’re the best!”

And what was it in the box?  A well-thought-out, kettle-sized cordless water boiler, complete with fixed cup-stand and integral, removable-for-cleaning drip tray.  Because it is made for everybody, not just ‘those bloody disableds‘, it wouldn’t look out of place in anybody’s kitchen.  It cost me £23.  And it came in a choice of colours.

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Express-Hot-Water-Dispenser-A

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Picnics, PBs and politics.

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Yet more grim news from #JusticeforLB.  Tim Smart, the ‘Interim Chair’ parachuted in by NHSI to sort out Southern Health, is doing a fair old impression of someone bucking for a change of name to Tim (Possibly-)Nice-but-Dim, as he seizes the first opportunity to fail to engage with the public.  Deeply disappointing.

Meanwhile, Mark Neary is struggling (again) with bureaucratic stupidity at all levels of government, in his quest to ensure that Steven can do perfectly ordinary things like go swimming.  He’s also struggling with ‘experts by non-experience‘ who insist, in quite spectacular displays of non-person-centredness and ignorance of non-directiveness and in the face of all the evidence, that he ‘should’ be having a good experience of Personal Budgets (PBs) and Direct Payments.  He isn’t.

It reminds me of an argument I had with my tutor about political philosophies.  We were reading a series of novels that included Le Rouge et Le Noir, La Faute de l’Abbé Mouret and L’Espoir and got into a big stushie about secularism, anticlericalism, and Communism (amongst other things).  The tutor argued that Communism was a secular political philosophy.  I argued that it was an anticlerical religion because it had articles of faith, such as the required belief in the historical inevitability of dictatorship of the proletariat; a millenarian postulate, if ever there was one.  We eventually agreed that any system would work, provided everyone in it was of perfect good-will; but that since people are without exception imperfect, no system could work flawlessly.  We also agreed that in practical terms, neither theocracy nor Soviet Communism were very appealing.

And the same applies to Foundation Trusts and Personal Budgets and other things like Education, Health and Care Plans.  They are not necessarily either good or bad things in and of themselves, but like all theoretical constructs, are, in the real world, just (and only) as good as their implementation.  In turn, implementation is generally as good as the people responsible for it.  It’s no good saying that the service structure is excellent if the services themselves are execrable and delivered or run by the malicious, the hidebound or the simply uninterested.

Whatever system you’re engaging with, you’d better hope, or pray, to whatever entities you think may influence the outcome, that you get good people controlling things.

And meantime, be prepared to shovel shite.

Tea for Two.

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Me:  Morning, Grenouille, what do you want to drink with your breakfast?

G:  What you having?

Me:  Chai.  Want to share?  Or I can make you Assam, if you prefer to have the usual.

G (blearily):  Does chai have caffeine?  Feel like I need it…

Proper chip off the old block, aren’t you, kiddo?  Gimme five!  Your pot-of-coffee-to-himself Papa will be so proud!

I.Can’t.Even.

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This latest #JusticeforLB development is almost beyond comment.  It does, however, throw into sharp relief the siege mentality obviously operating within Southern Health; and speaks volumes about Sloven culture and the messages purposefully circulated within, and outwith, the organisation.

The transcript below comes from a message left on LB’s mother’s office answerphone from someone claiming to work for Sloven.  It doesn’t much matter whether the caller is a member of management, a lower-ranking staff-member, or just an unconnected crank; she has obviously absorbed and internalised an execrable attitude to LB and to his mother, and feels justified in spewing it out.  A toxic attitude that aligns precisely with Sloven’s dealings with LB and his family, all through the more-than-three-years since LB was admitted to STATT.

And Sloven’s response?  Of a piece with their previous form, and with the call.

Sloven ansafone response.Sloven are not setting up an enquiry, actively seeking the culprit and requiring staff to disclose information.  They’re not even setting up an internal enquiry and asking for all available information.  Oh no.  They will, apparently, set up a ‘full internal investigation’, if and when they receive ‘any information’ in response to their ‘urging’.

Pathetic.  As always.

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Good morning, hello. Hi, I believe this is a message for Dr. Sara Ryan, um, I’ve been seeing on the media about your son, your poor son that died under the care of Southern Health.  I work for Southern Health and I’m, it, it’s awful that you’ve lost him, I’m so sorry that you have done, um, ’s tragic, and … I hope you find some closure after the report, the, um, issue of the GMB … CQC report today, but I do think you are being reall- very vindictive.  I think you are a vindictive cow.  On TV all the time, ummm, slating the NHS Southern Health.  With your intelligence background, you know, as much as anybody else knows, that Southern Health only took over those units in Oxfordshire recentl-, you know, the recent months before your son died.  You know, with your background, it takes a while to make changes in anywhere, and I think now you’ve just become a bitch and you want some attention, but you are vindictive, you are unpleasant, and you are a nasty cow.

This message was recorded at 9.33am on Friday April 29th.  To save this message press 1.  <beep> To-  Message saved.

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Just Want To Go Home.

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Deeply honoured to have been entrusted with the end-of-week post for The ATU Scandal: 7 Days of Action.  Please mosey on over to the site HERE and see what you can do to help expose and end this terrible waste of lives. 

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Eden * Jack * Thomas * Tianze * Stephen * Robert * P *

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So, how are you feeling after reading all seven stories of life in an ATU?  I feel punch-drunk.  It is hard to credit that so much cruelty, both careless and deliberate, can be packed into a single week’s worth of posts, but there they are.

The first thing that struck me, looking back over them, was, where are the girls?  According to data guru Professor Chris Hatton of Lancaster University, women make up a quarter of ATU inmates (in the light of these stories, I don’t feel ‘patients’ is an appropriate term).  So we might have expected to see one or two girls alongside the lads, but no women’s stories were offered.  We don’t know why no stories came in;  but we do know that the stories of Claire Dyer, a Cardiff woman with autism and learning disabilities whose plight made national headlines in 2014, and Stephanie Bincliffe, who died in an ATU in 2013, have themes in common with the stories published in 7 Days of Action for ATUs.

So what are those themes?

From these stories, they seem to be:

– A failure of forward planning.  The relevant authorities seem so bogged down in crisis management that they take a ‘cross that bridge when we come to it’ attitude to anything that isn’t an immediate, catastrophic emergency.  Of course, the failure to plan in advance is what allows the crises to arise.  Learning disabled people and their families don’t tip from totally hunky-dory to complete disaster overnight.

Eden ‘reached crisis point due to lack of the right support’.  Robert ‘became depressed and very anxious’ after autism-unfriendly changes to the way his residential home was run.  Jack stuck it out at college for 18 months, but his heightened anxieties were noticeable ’on the transition from school to college’.  Thomas ‘started to be troubled’ in his early teens.  Tianze was finding changes to his routines ever more difficult to cope with.  The anonymous dude on Day 7, P, was hospitalised and sectioned, not because his behaviour had escalated or he was ill, but because his Mum was unwell.  And Claire Dyer reacted against two years of utter boredom in a Unit in Cardiff that was not set up to support her needs as an autistic person.

– It is dangerous to ask for support, even when it is dangerous not to.  Paula Rawnsley wishes she ‘never had asked for help’.  Nina Ni thought Tianze’s Community Treatment Order ‘was part of a plan to help him get better and for us to receive better support’, but in fact Tianze got worse.  Leo Andrade now wishes she ‘never agreed to send my son (Stephen) away in the first place’.  When Mark Neary had flu, he asked for a few days’ respite care for his son; Steven didn’t come home for nearly a year, and only got to return because Mark took his case to court.  After he assaulted a member of staff at school, Connor Sparrowhawk’s parents thought that by seeking treatment for him in their local Unit, they were ‘buying a bit of time for everyone, including Connor’.  Connor’s time was cut short by neglect in the Unit and he never came home alive.

– Autism is not ‘curable’ and inappropriate approaches can worsen behaviour.  Eden is losing his ability to speak. P was restrained so that the only part of himself he could move was his head, which he banged on the floor until he injured himself.  Twice.  Robert got stuck in a downward spiral of anxiety and frustration leading to outbursts which resulted in restrictions being imposed, which made him more frustrated and anxious, which….

– Mental health care does not, generally speaking, understand autism, which is a neurological condition, not a mental illness. An autistic person’s coping mechanisms – rituals, stimming, verbal tics – may be severely discouraged.  Often, no allowances are made for a person’s sensory difficulties. P’s screams in the carpark were interpreted as mental illness – insanity, in effect – rather than perfectly understandable distress.  Steven Neary’s quotation of song lyrics was dismissed as echolalia rather than a way of conveying meaning.  Often the person is disciplined for behaving in the only way that their autism allows them to.   

– Medication and ‘treatments’ like restraint and seclusion can and do adversely affect health.  Jack had ‘extreme effects’ from the three-drug regime he was prescribed.  Eden gained 16 stone in 5 years while being injected with the antipsychotic Clopixol.  Steven Neary put on 15 stone in 5 years of taking the antipsychotic Risperidone, and developed the agonising and life-threatening condition called nonalcoholic steatohepatitis – an inflamed, fatty liver.  (Neither Eden nor Steven have a psychotic disorder).  Stephanie Bincliffe gained ten stone in five years from a combination of drugs and being confined to a single padded room.  She died of heart problems and sleep apnoea, aged 25 and weighing 26 stone. P is becoming emaciated.  Thomas was given ‘cocktails of drugs’ that left him zombiefied.  Stephen has ‘changed from a beautiful handsome happy smiley boy to one with very sad empty eyes’.  Tianze has frequently been restrained prone, and like both P and Thomas, has suffered restraint injuries.

– Units are total institutions, with commensurate risks of neglect and abuse.  Families, the people who know and understand the learning-disabled person best, are sidelined, their expertise dismissed, their contributions disdained or blocked, and their visiting arbitrarily cut short or denied.  Stephanie Bincliffe was neglected in her padded cell for seven years.  Connor’s epilepsy was not recorded or acknowledged, so that he was left to bathe alone and drowned following a seizure. P is receiving neither assessment, nor treatment, nor discharge planning.  Thomas was assaulted by a staff-member in one care home, and suffered carpet-burns in another from being dragged along the floor.  Although his mother repeatedly told staff that he had a serious chest infection, he was not treated for it and succumbed to a fatal pneumonia.

– For people with complex difficulties, leaving an ATU is much harder than entering one.  As Sallowpad the Raven remarks of Tashbaan, it’s a case of “Easily in but not easily out, as the lobster said in the lobster pot”.  People may enter as voluntary patients, or under Section 2 of the Mental Health Act (a 28-day detention for assessment and treatment) but if their distress causes them to behave in a way that the facility does not approve of, they may end up in long-term detention under the provisions of other sections of the Mental Health Act.  Eden was admitted as a voluntary patient, but ended up on a forensic section – that is, he was detained in the Unit as an alternative to being sent to prison – because staff pressed assault charges against him.  P is trapped in a limbo that is more like his and his family’s personal hell.  Tianze’s parents’ home has been fully adapted to meet his needs, but he is still detained in hospital, two years after he was told he was going to hospital for a one-night admission.  Leo Andrade reports that, ‘In the meetings about Stephen, discharge is never discussed.’

– Once Local Authorities have got someone into long-term NHS care, they are extremely reluctant to reassume the cost and effort of providing that person’s care in the community.  Bromley are doing nothing to bring Robert home from Stoke, although the hospital says he does not need inpatient treatment.  It is fourteen months since Hammersmith and Fulham were told Eden was ready to come home, and in that time they have done nothing with the information given them to facilitate his return.  Hillingdon were keen to ship Steven Neary off to a permanent placement in a hospital in Wales.  Connor’s return home, which depended on adequate community support, was first mooted on April 14.  There was still nothing in place or even in prospect when he drowned in the Unit bath on 4 July.

– Your adult children are not your children any more, and if they have learning disabilities or autism, they may not even be your family members.  They belong to the State.  Leo has been told that her son’s data protection rights override her right as his mother to seek a second opinion in his best interests, and is being given the runaround by various organisations which each ‘own’ a piece of Stephen, but none of which actually take overall responsibility for his welfare.  Mark Neary is not acknowledged as Steven’s Dad; in officialese, he is Steven’s ‘live-in carer’.

But parents do not stop caring about and for their children just because they hit a particular age.  Indeed, in other circumstances, parents are expected to continue their caring roles for their competent adult children.  Eldest is in Year 13 and turned 18 some months ago, as college very well knows, but if he is late to or absent from classes, I still get a text from staff demanding that I account for his whereabouts.

The truth is that people do not care about and for their family members simply as a function of their age, but as a function of their needs.  We naturally spend more time looking after a very young, or a sick, or a disabled child.  We look after unwell or frail parents, while leaving our healthy and energetic octogenarians to walk their dogs, run their errands, take holidays to Samarkand and generally get on with it as they have always done.  When I was ill after Eldest was born, my parents came to help.  My father spent his time in the kitchen, impersonating a six-foot-two Food Fairy.  My mother hovered over me and shuttled E from his cot to my arms every time he woke up.  “Why?” I asked fretfully, one day.  “Why don’t you take a turn with E?  Why are you fussing over me?  Why don’t you leave me in peace?”  Mum smiled.  “Because he’s your baby, and it’s your job to look after him.  But you’re our baby, and it’s our job to look after you.”  I was in my 30s.

The odds are weighted – dangerously and disgracefully – against caring families.  Once upon a time, autism was blamed on ‘refrigerator mothers’, who were said to be responsible for their children’s ‘failure’ to ‘develop normally’.

Parent-blaming is still widespread, as shown in the exchange recorded at 12.56 on day 7 of Connor’s inquest.  Families are blamed for ‘upsetting’ their incarcerated young people and banned from visiting or have their visits arbitrarily curtailed.  Visits from under-age family members are generally forbidden and such children actually have less contact with their relatives who reside in ATUs, than they would if those people were in prison.

Families’ rights to be consulted are easy (illegally) to ignore or bypass.  Their legitimate efforts to act in their children’s best interest may be blocked by jobsworthy use of improbable pieces of legislation, as with the Andrades and the Data Protection Act.  In an adversarial legal system, they may be given one piece of accurate but unilluminating information, yet have other, potentially helpful information withheld from them because “it’s not my job”.  Or they may be treated to ignorant or wilful misinterpretations of the law, as the Neary family was.  Questioning the system can be treated as a punishable act.  Some families are threatened that if they make waves, they will be cut off from their loved ones, that speaking about what has happened will result in their ties being legally severed and their child becoming a permanent ward of the State.  Sometimes these menaces have more to do with the perceived risk to the organisation’s image and reputation than they do with the best interests of the person supposedly at the centre of the concerns. Hillingdon clearly demonstrated their focus when they breached Steven Neary’s Article 8 rights by putting out a disgusting press release about him, “full of contentious and inaccurate information, and creating a particularly unfair and negative picture of Steven and his behaviour”, the day before the 2011 hearing into his case opened ([2011] EWCOP 1377, para 155(7)).

Even if it is not actually within the legal powers of the organisations to do the things they have threatened, families are in a multiple bind: they do not know what is true and what is not; they do not know where to start looking in order to disentangle truth from oppressive fiction; seeking legal advice for their child may be prohibitively costly or excessively lengthy via the legal aid route; and if the organisation goes ahead regardless and does whatever it intends, there may end up being no available redress, despite the illegality of the organisation’s actions, because those actions may have moved the situation to a point where it seems inescapable and the problems insoluble.

Families inhabit one of two spaces: naïveté or fear.  When your learning-disabled child is small, you live in hope.  People tell you about all the provision that is available and to celebrate every milestone.  You learn the word ‘inchstone’ and celebrate every one.  Later on, you realise that you were naïve, and you begin to worry.  The more you learn, the more the fear grows.  Speaking out about your fears can draw unwelcome official attention.  You may even receive threats.  Some families have thought about participating in 7 Days, and then decided it is too much of a risk.  P’s family feel his story is crying out to be told, but were too afraid to do so except in conditions of anonymity.

So is there any hope?

Yes.

The first beacon of hope comes from the families who have so bravely and generously shared their stories this week.  Not only are they helping to spread knowledge in the world – always A Good Thing – but they have begun a class action to get it formally acknowledged that if a person is kept in an ATU beyond the period needed for active assessment and treatment under the Mental Health Act, or when the ATU is no longer the ‘least restrictive option’ under the Mental Capacity Act, he or she is unlawfully detained and must be released.   It then is the duty of the home Local Authority, under Section 9 of the Care Act 2014, to assess whether the person has needs for care and support, and, if he or she does, what those needs are. Having found and assessed needs, the Local Authority has a duty to promote the person’s wellbeing and to meet their eligible needs.

The second is that the Care Act 2014 is complemented by Children and Families Act 2014, which instituted Education, Health and Care Plans (EHCPs) for disabled children and young people from birth to 25.  EHCPs are focussed on working towards the best possible outcomes for the children who hold them, and they require a longer view to be taken of future needs and planning for transitions that will help the young person move towards those outcomes.  I don’t for one moment suppose that either piece of legislation on its own will miraculously make everything run smoothly.  Nevertheless, families now have the opportunity to insist that their Authority thinks about, and plans for, their disabled child’s future.

The third is that there are some ‘ninjas’ out there, ready and willing and able to help.  People like Sam Sly, who has a proven track record in successfully springing people from ATUs and keeping them in their communities, and who wrote 7 Days’ how-to.  People like lawyer Hedd Emrys, who wants to look at ‘establishing a permanent pro bono unit to deal with ATU cases … at an early stage’ (although I’d hope any ATU pro bono unit would also hit legal aid for every penny to which families may be entitled, in the interests of offering pro bono support to the greatest possible number of families).  People like Paul Richards of Stay Up Late, who is running the ‘CareBnB’ service  to offer people somewhere to stay when they have to travel very long distances to visit the ATU where their family member is held.

Please, think about what you could do.  Talk to people about what would be helpful and feasible.  Then go and set about it, and let as many people as possible know what you are up to.

***

I want to finish by going back to the young man who was the original inspiration for Mark Neary, who is the person behind Seven Days of Action.

Steven Neary survived his year of unwarranted imprisonment in an ATU remarkably well for an autistic person who was pushed right out of his comfort zone for such an extended period.  He persisted in putting forward his desire to go home.  Whenever the Unit manager came in, Steven would sing Queen’s ‘I Want To Break Free’.  And when another male member of staff was on shift, Steven would treat him to a rendition of ‘Sloop John B’.

The Beach Boys’ version of ‘Sloop John B’ was released exactly fifty years ago this month, in April 1966.  Here it is, with a new lyric for Steven, Connor, Eden, Chris, Jack, Thomas, Robert, Stephen, Tianze, P, Claire, Stephanie, and all the other dudes who just want to go home.

I’m stuck in an ATU
Five years after Winterbourne View
Seems like I’ll be here forever, I want to go home
The NHS say
I’ll have to ask my LA
I feel so broke up
Just want to go home.

So close long-term Units down
Take me back to my home town
Somewhere I can be safe, a place of my own
And give proper thought
To what I need for support
I feel so broke up
I want to go home.

Connor got put inside
A hundred days later, he died
His inquest found neglect, so Southern Health lied.
They still spin and hedge
Claim failings ‘alleged’
I feel so broke up
He never went home.

So close long-term Units down
Take me back to my home town
Somewhere I can be safe, a place of my own
And give real thought
To what I need for support
I feel so broke up
I want to go home.

Verita One and Two
Mazars and Hunt’s UQ
Monitor, NHSI, the CQC
It’s painfully clear
That money’s why we’re still here
We all feel broke up
We want to go home.

So close long-term Units down
Take me back to my home town
Somewhere I can be safe, a place of my own
And give proper thought
To my need for support
I feel so broke up
Just want to go home.

***

***

Reassurance.

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News today that the Hampshire All Party Parliamentary Group is to ‘quiz’ Southern Health Chief Executive Katrina Percy.

The piece is not very clear on exactly what is expected to happen. Initially we are told that Ms Percy will be ‘scrutinised’, which sounds promising, and would be a novel experience for the Trust CEO, who is accustomed to being deferred to and lauded. But then it appears that Ms. Percy will be ‘addressing the meeting’, which sounds, depressingly, much more in keeping with her preferred style. On the other hand, local MP Suella Fernandes is expecting some ‘frank questions’ to be put. But there again, the said Member for Fareham is only wanting ‘reassurance’.

Ms. Fernandes, I can tell you now, you will get reassurance by the syrupy bucketload. Reassurance is a Sloven speciality, to be poured generously over concerns until they disappear under the sticky golden tide of sugary sweetness. And the recipe for this elixir of reassurance seems to be one part sparkly mendacity to two parts emollient obfuscation, spun into impenetrable thickness in an expensive PR machine.

The New Forest East MP, Julian Lewis, however, has shown himself in the past highly capable of subjecting Sloven spin to truly rigorous, data-based scrutiny (thank-you, @59kemppaul, for the heads-up). I hope Mr. Lewis is able to attend the meeting and give Ms Percy a thorough in-person grilling. Because while a few may be content to swallow syrup of reassurance, what everybody else wants is knowledge: knowledge that crunches like an crisp apple with the sharply acid taste of factual truth.