Petra: Rolling Rocks Uphill.

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Week Two of #7DaysofAction for ATUs has come and gone, and there seems to be very little good news.  When I wrote the end-of-week summary piece for Week One, back in April, I was quite optimistic that Education, Health and Care Plans would in future supply support to ensure that young people would be diverted away from ATUs before they ever got near one.  However, EHCPs do not seem at all to be working as envisaged, being frequently late in arriving and often inadequate when they do.  Then this week, I heard a story to make anybody despair.

Petra is a 20-something mum-of-three.  She has an eight-year-old son, a six-year-old daughter, and a five-month-old baby, and the two older children are both struggling in school.

Petra herself had a mixed experience of school.  She loved learning, but she had trouble writing things down in the way teachers like them arranged.  At secondary school, she especially enjoyed history and English, but again, her written work meant she ended up in bottom sets for all subjects.  Most of her fellow-pupils in these groups were noisy and disruptive.  Petra, a quiet and unassuming person, could neither quell their boisterousness nor study well in the midst of it.  Although she sat a full sweep of GCSE’s, she was ungraded in every single paper and left school without a qualification to her name.

When her son was born, he was found to have a heart defect.  His sister was hospitalised with repeated infections as a baby, and was very slow to walk.  By the time the little girl was four, she was still in nappies and didn’t speak a word.  And by then, her big brother was behaving in a way that was hard to manage.  He slept very little: four or five hours a night; and when he woke up, he woke the whole house up.  Neither child appeared to have any concept of danger, so Petra needed to have eyes in the back of her head.  That’s difficult when you are permanently exhausted.

Social services became involved.  Huge meetings were convened in Petra’s living-room, with every chair and all of the floor occupied by strangers.  Petra and her partner were sent on parenting courses and workers dropped in to watch how they managed the children.  Petra felt criticised and scrutinised.  She did everything that she was told to.  But it made no difference to how the children acted.

Eventually, Petra’s doctor arranged for her daughter to have genetic testing.  The tests came back showing her daughter had a genetic difference.  The rest of the family were tested.  Petra’s son had the same difference – and so did she.

Petra’s own Mum says she spent Petra’s entire childhood voicing her worries about her sweet, slowly-developing daughter, in vain.  She was told, repeatedly, that she was an over-anxious mother.  Now, way too late for help,  Petra was finally diagnosed with a learning disability arising from her genetic condition.  The Adult Speech Therapy service at last assessed Petra’s communication and wrote a report explaining her difficulties, and what services should do to help her understand.  Petra took the report to various departments, trying to find someone to listen to her concerns about her children.  No-one in the Local Authority seemed to hear.

Petra may not have passed any exams, but she knows how to use IT and social media.  Via the internet, she found a support group for people with the condition that she and her children have.  She got information, advice and – a new experience for her – found friends.  With support from her internet friends, and a great deal of effort, she managed to get a Statement of Special Educational Needs for her daughter.  But there were continuing problems.  Her daughter’s behaviour was increasingly hard to understand and manage; she insisted on routines and had great difficulty moving from one activity to another.  If anything was not to her liking, she would kick off into epic tantrums that involved constant screaming, destruction of anything breakable in the vicinity, and physical attacks, for hours on end.  Her daughter’s paediatrician ascribes all this to her genetic condition, but a locum paediatrician described it as autistic behaviour.  Two years later, Petra is still trying to access a formal autism evaluation for her girl, while enduring physical assaults from her daughter that are becoming more serious as the child grows bigger and stronger.

In the meantime her son has been falling further and further behind his classmates.  Now in Year 4, he cannot even manage Reception-level work.  He doesn’t understand how to play with other children in a give-and-take way.  He has no friends and Petra worries he will be picked on and bullied for his oddities.  In July 2014, she wrote to ask for a Statement for him, but her Local Authority told her they were not doing Statements any more because EHCPs were starting that September.  Petra asked, through the school, for him to be given an EHCP assessment.  He has not yet been assessed for an EHCP.  He still has no concept of danger, and is over-friendly to strangers, to his mother’s considerable alarm.  He sleeps no more than he ever did and whiles away the wee small hours, either with tormenting the rest of his family, or with destroying his bedroom: disembowelling pillows and mattresses, picking the paper off the wall and dismantling his toys and furniture.

With all this to contend with, Petra and her partner did not intend to have any more children.  They did not realise baby number three was on the way until relatively late on in the pregnancy, and then they were in a horrible quandary.  It was too late for a medical or surgical termination of the pregnancy.  The option they were told about was a ‘partial-birth’ abortion, which would only be offered if the baby was disabled.  This baby would have the same 50/50 chance of inheriting the same condition as the elder two, but Petra decided she couldn’t face giving birth to a dead baby.  In the end she and her partner didn’t bother with an amniocentesis, held their breaths and hoped.

Petra asked for genetic testing for the baby immediately after birth.  The hospital doctor first tried to dissuade her, then simply failed to send the blood samples off for processing.  Petra, in a near-zombie state from caring for a non-sleeping newborn alongside her two non-sleeping children while recovering from a C-section, had to ask, cajole, insist, and finally take the baby for a a second, wholly unnecessary blood draw.  It confirmed what she already feared from observing her infant: the baby also had the genetic condition.

Petra asked for help.  Her partner, as exhausted as she, was suffering seizures brought on by tiredness, her wider family were for various occupational and geographic reasons unable to offer much practical support, and the summer holidays were looming: six weeks without even the respite afforded by six hours’ school, five days a week.  More people came and sat on Petra’s sofa and took notes.  And then… nothing.  No holiday clubs.  No respite care.  No suggestion of what support might be available or forthcoming.  Petra limped through the summer holidays, feeling increasingly hopeless and desperate.  Things came to a head of sorts at the first weekend of the autumn term, when the children, probably stressed after a week of lessons, ran amok.  Petra phoned the emergency social work team and an adult social worker came out to see her the following week.  A friend from her internet group sat in on the meeting and it was agreed that Petra needed a multi-disciplinary team to help her co-ordinate the many health, education and social care professionals involved.  She needed help to care for the children and get them out to school on time, and above all, she needed respite care for the children so that she herself could get some rest.  But organising those things would be the responsibility, not of the adult social work team, but of children’s services.

So yet again, nothing happened.  Half-term arrived, and once more, there was nothing for Petra.  She was offered a meeting with an organisation that runs parenting skills courses and ‘child behaviour support’ programmes, but when she attended, was told it was an obviously inappropriate referral as they had nothing relevant to offer.  No practical help.  No care for the children.  No rest for herself.

I have to admit I am baffled.  How can a household containing four disabled people, including three young children with disabilities, and a fifth person with a serious health condition, get no social care at all?  Why, when the Authority has been ‘involved’ with the family for years, does Petra have to keep going on the same weary round, knocking at the same closed doors?

Why is Petra, as a learning-disabled adult, not entitled under the Care Act to support that will promote her well-being in respect of her personal dignity, her physical and mental health and emotional well-being, and her domestic, family and personal relationships?  Why has she never been offered advocacy services?  Waking night care?  Weekend and holiday respite?  Short breaks?

Why are the children, all of whom have a genetic condition that in nearly every case causes learning disabilities alongside communication and health problems, not all acknowledged to have Special Educational Needs as defined by Section 20 of the Children and Families Act?  Why has no-one from the Authority supported Petra to get EHCP provision for her son?  Why is the genetics service refusing to make any referrals for the baby before December?

Petra, according to her internet friends, is at the end of a stretched-to-the-extreme and frayed-to-snapping-point tether.  She is trying very hard to do it right, but she can’t manage some of the things that have been suggested, like applying for Direct Payments.  Last weekend, they say, she was talking about asking to have the older children taken into care.  Her friends persuaded her to call Social Services’ out-of-hours line again, and once again she got no immediate help… but the following day she got a call from her GP, saying that he had been contacted by the service and told she was unwell and mentally unstable.  Petra, furious, shamed and frightened, assured him that it was ‘just because she had been a bit tired’, got off the phone and back online and swore that was the last time she would ever, ever ask for help.

Unless someone can suggest a way to sort this out fast and effectively, I’ve a nasty feeling that the next time her Authority’s Social Services department hears from Petra, will be when she shows up with her older children, their suitcases and a speech along the lines of, “You’ve been telling me for years that I should do better and don’t need help.  Well, I can’t and I do.  Since you’re so clever, it’s your turn to see how you get on. Let me know how it goes.”

Who could blame her?  I am generally a fit and healthy person; I have just one disabled child, who has high medical needs and learning disabilities but is mostly well-behaved; and in spite of all that, some days I am on my knees.  I can’t imagine looking after three children with disabilities, two of whom are bouncing off the walls 19 hours a day, never mind doing it all as a person with a disability myself.

And then what?  In ten years’ time, will both the children be in, or on their way to, ATUs?  I wouldn’t bet against it.  Yet I would equally put money on it being avoidable, if  just a little support were put in to keep the strains on this family at a manageable level.

That no help is forthcoming is chokingly, nauseatingly shameful.

Pharmacy Tales.

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More repeat-prescription mayhem.  G has had a bit of kit routinely updated, and the new machine needs different consumables.  Our GP’s surgery, like all its peers, is under the cost-cutting cosh, and has been leery, lately, about the quantities of expensive consumables that G requires on a monthly basis.  As it happens, I had ordered an extra quantity of these particular consumables in August, to see us through the holidays, and we had rather a lot still left the following month.  So when, in September, I wrote the request for the repeat prescription to be altered, I added that in the interests of reducing waste, I would carry on using the old kit until all its consumables were finished, but in the meantime, could they please add New Consumables to, and remove Old Consumables from, the repeat prescription list.

Unfortunately, someone at the surgery seems to have taken this as a cue to spring-clean G’s repeat-prescription list of other things too.  G is prescribed Emergency Medicine, which is there to be used if other things fail.  It’s not something G can afford to be without, but it is, thankfully, not something that needs to be used very often.  So we need Emergency Medicine to be on the repeat prescription permanently, but unless G has an unlucky spell, we only have to replenish it when the stock goes out-of-date. The diligent doctor who altered the consumables prescription seems to have removed anything that hadn’t been ordered in the previous three-to-six months from the repeat.

So I wrote another letter, explaining why Emergency Medicine needed to go back on the repeat, even if it is only ordered once every eighteen months or so, and handed it in along with the October requests.  And, with dispiriting inevitability, when I went to collect the prescriptions, the Emergency Medicine was there, but nothing else.

The pharmacy is in the ground floor of a big block that also houses the surgery, several other practices, and various community services, so I headed out to the stairs and went up to the GPs’ floor.  The receptionist was adamant that the prescriptions had been issued, so I went back down again… nope.  Back up to the GP’s once more, where further enquiries revealed that prescriptions had indeed been issued – but not since mid-September.  The receptionist promised to get the October requirements organised as soon as possible, and I trekked back down to the pharmacy, where I buttonholed Sharon, the lovely pharmacy assistant who has been an invaluable ally in previous battles, and asked if she could give me a call when the prescription came through.

Sharon gave me The Look.  “Stuffed up G’s prescription again, have they?” she said.

“Er…”

“C’mon, you need to come and speak to my mate Brónach.  Brón!”  She led me over to another counter.  “Brón! Can you take this lady’s details please and call her when G’s prescription comes in?  They upstairs have made a pig’s ear of the repeats and she’s been up and down like a bride’s nightie…”

Brónach looked horrified.  “Shazza!  You can’t say that in front of a customer!”

Sharon flapped a hand dismissively.  “I can in front of this lady.  Known her for years.  Not the shockable kind, are you, duck?”

I smiled and shook my head.  I didn’t mention that the version of the saying with which I was familiar was even cruder.  Echoing down a decades-long tunnel, from the schoolroom centre to my mind’s ear, I could hear the broad Scots accent of salty-tongued ‘trainee’ Maggie , commenting derisively: “… up an’ doon like a hoor’s drooers”.

The Palace and the Pigsty.

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E goes up as an undergraduate in a couple of weeks.  He didn’t manage to get a place in Hall, and the prospect of him spending his first year in digs was somewhat daunting.  I had visions of an insanitary Young Ones-style flat, but student accommodation these days is considerably more recherché than it used to be.  A trawl of student lettings websites came up with some truly palatial purpose-built apartments.

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Even the ‘shared houses’ have gone way, way up in the world:

student-sitting-3   student-kitchen-4stdent-postgrad-bedstudent-postgrad-bed-2student-postgrad-bath

Very nice.  Lucky lads and lasses, these privileged ones.  Rob Mitchell, Calderdale’s Principal Social Worker (of the Year 2015, no less), taking his own son up for the first time, was also mulling over chance, privilege and good fortune:

Sara Ryan, who has more right than most to an opinion, replied, “You don’t. You just hope with all your heart.”

Mark Neary’s son, Steven, is also in search of somewhere new to live, as his ‘secure temporary’ housing is due to be demolished early next year for redevelopment.  In Steven’s case, though, the search is complicated by his autism, which means that his potential choices are restricted to social housing.

Mark has been bidding for every available social housing property for which Steven might be eligible (very few, as it turned out) and was getting close to despairing of finding something suitable before Demolition Day, when he was offered a direct allocation of a flat for Steven in “an exclusive and stylish new collection of studio, one and two bedroom apartments set within the leafy suburb of Cowley, Uxbridge, surrounded by picturesque parks and plenty of idyllic countryside walks … the perfect combination of peaceful countryside living within a town environment.”

A walk past the place and a peer-through-the-ground-floor-windows inspection confirmed that it was nearly ready for occupation, with carpets and white goods already installed.  The mock-ups of the flat interiors suggested that these affordable flats, like the student ones, could be positively luxurious.  Mark was overjoyed to accept the offer.

So maybe Rob is too cynical?  People with autism, like their student contemporaries, get offered modernity and comfort suited to their needs?

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The keys were due to be handed over to the Housing Association five weeks later.  Five days before that, Mark found out – quite by chance – that there was a hitch.  Nobody could quite say what, though later rumour suggested major problems with the electrical installation.  But the upshot was that to be sure of getting Steven a new place to live before he became homeless, Mark had to go back to bidding for other, non-direct-allocation housing.

Steven was offered first refusal on another flat – except he wasn’t, because Mark had to make the decision for him before there was time for Steven to see the place.  It wasn’t right for Steven, and with much trepidation, Mark turned it down.

The next flat was the right size and in the right place, but, said the Housing Manager, a bit of a mess.  That proved to be an understatement.  Mark considered it a ‘pigsty’; I think RSPCA officers might have condemned it as unfit even for pigs.

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Mark is swearing off hoping.  Hope, the one thing left in Pandora’s box, and the only thing that wasn’t a curse.  Yet in the face of inevitable let-down, hope can be a curse, one that dooms a person to make poor decisions, or renders them unable to call out wrongs, or causes irretrievable delay as hope prevents action.  And don’t think you can escape by abandoning  hope: the sneaky blighter will turn and rend you with claws of guilt for giving up.

Looking at pictures of the flat, you can see exactly why Mark renounced hope, even before Hillingdon Council declared that Steven was expected to move in immediately; and refused to let Mark have time, permission or a rent-holiday to do the flat up to suit Steven’s needs and tastes.

 And no, I don’t think Rob Mitchell is taking too sour a view of matters social care.  If anything, he’s understating the case.

The End of the Paralympics?

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Been following the #RioProblems hashtag?  Zika, sewage-polluted seas, serious transport problems, empty stadia, fart-flavour green diving pools…  Well, curb your indifference, folks, because it’s about to get worse.  Last week, as the Olympics were ending, news began to seep out of that many athletes might not receive funding to attend the Paralympics, eliminating up to 40 of the smaller competing nations: ‘Situation ‘precarious’ over travel grant delays’, said the BBC.  What might this mean for the future of Paralympic sport?

Come the weekend, headlines emphasising the scope and scale of the calamity were widespread:

BUMPY START: With the Olympics done, it’s time for the Paralympics—which are looking like a disaster

Rio 2016: Hosts ‘spend money meant for the Paralympics on Olympics’

There should, suggested some, be a transfer of monies in the other direction:

Rio 2016: Paralympics ‘should be helped by International Olympic Committee’

And finally:

For disabled people like me, it’s clear that the Paralympics are nothing more than an afterthought

I thought that four years ago.

I loved the London Games, although I was torn between being pleased that the whole Games, Olympics and Paralympics, was a sellout; and bitterly disappointed that despite bidding for a great many tickets for both Games, we didn’t get to attend any events at all.  I was delighted that my friend’s daughter, newly wheelchair-dependent, got to go to two events, was treated like Royalty and saw the top athletes in her preferred wheelchair sport.  We watched as much of the TV coverage as we could and thoroughly enjoyed it.  But there was a niggle, nevertheless.  I’ve just dug out the piece I wrote back then; and notwithstanding Oscar Pistorius’ descent into homicidal criminality a short five months later, I think it still stands.  Comments welcomed.

The End of the Paralympics?

 6 September 2012 at 21:44

Yayy London 2012!  Yayy the biggest and most-widely-watched Paralympics ever!  Yayy 7/7 Underground bombing survivor and double amputee Martine Wright, competing in the sitting volleyball!  Yayy sexy cyborg runner Oscar Pistorius, fresh from contributing to South Africa’s achievement of a seasonal best in the Olympic men’s 4 x 400m relay final!  Only three more days of this fabulousness, and the London Paralympics will close down.  But the Paralympics won’t be ending… yet.

Commentators have been keen to tell us how wonderful it is that it has taken a mere 64 years for the Paralympic movement to grow from a handful of injured WWII ex-servicemen at Stoke Mandeville spinal hospital, having a wheelchair archery competition on the opening day of the 1948 London Olympics, to today’s 4,294 participants from 164 countries.

Prime Minister David Cameron and London Mayor Boris Johnson placed great emphasis on the fact that Paralympic tickets have sold out just as the Olympic ones did (all too well aware of that, BoJo and Dave me old muckers, as we didn’t manage to lay our mitts on a single one).  Channel 4, which is screening the games, (since the BBC got the Olympics), produced cheeky ads saying, “Thanks for the warm-up” and “Now meet the superhumans”.  The opening ceremony featured Sir Ian McKellen and Stephen Hawking CH CBE FRS FRSA, and, like the Olympics opening ceremony, had themes referencing Shakespeare’s ‘The Tempest’.

But.

I watched the Paralympic cauldron being lit, and not only was it déjà vu, it was rather cut-price déjà vu at that, since the Paralympics have fewer competing nations, so this cauldron had fewer components than the Olympic one.  The torch used to light it, incidentally, was the same design as the Olympic one – but the silver of a second-place award, instead of gold.  The Paralympic flag originally had five curved ‘agitos’ symbols, in the same bright colours as the Olympic rings, but the International Olympic Committee objected, and the ‘agitos’ have been reduced to three and their hues muted.  Despite Seb Coe’s avowal that “We want (London 2012) to change public attitudes towards disability, celebrate the excellence of Paralympic sport and to enshrine from the very outset that the two Games are an integrated whole in every way”, it is evident that the Paralympics are still seen as the poor relation, the second-rater, the inferior to be patronisingly condescended to.  Sound familiar?  Anybody with experience of what Frankie Miller calls ‘disability world’ will recognise it instantly.

Listen to the Paralympians themselves, being interviewed.  “I’ve been training for years for this moment.” “It’s brilliant having achieved this (medal).  Training is horrible sometimes, so hard, but now it’s all worthwhile”  “We’re not ‘supercrips’, we’re athletes”.

Quite.

At one point during the opening ceremony, the Channel 4 commentator referred enthusiastically to ‘Team GB’.  Then hastily followed up with, “Sorry, I mean ‘Paralympics GB’”.  I don’t shout at the TV very often – honestly – but that had me bellowing.  Paralympians DO NOT go into the arena representing their disability, they go out representing their COUNTRY.  Just like Olympians.  Why the hell shouldn’t Paralympians be entitled to call themselves part of ‘Team GB’?  (Let’s leave to one side the fact that it should be ‘Team UK’ or ‘Team GB and Northern Ireland’…).

The Paralympics made great viewing.  This year’s may have been the biggest, and, for all I know, the best Paralympic Games ever – but I wish it were the last.  I would prefer never to see another.  I want to see the Paralympics and the Olympics fully integrated (and, what’s more, be buggered to any ‘Special Olympics’ ghettoisation).  I realise that it will cause huge logistical problems to accommodate all the athletes simultaneously and provide enough facilities for everyone, but problems are there to be solved, people, have a little ambition!  Of course, it’s too late for Rio, where the preparations are already underway for 2016, but we really ought to see the Usain Boltalike of 2020 foreshadowed or followed by twentytwenty’s Jonnie Peacock-equivalent, the Marianne Vosses and Sarah Storeys of eight years hence competing in different events but the same time-frame.   I want to see Olympic wheelchair fencing and Olympic blind football. 

Long, long before ‘the Paralympics come home to the UK’ for a third time, I want elite sportspeople with disabilities to be off the fringes and getting well stuck in to the middle of things, right beside and in amongst all the other elite athletes, where they belong.  I want the Olympics living up to their declaration that “The practice of sport is a human right. Every individual must have the possibility of practising sport, without discrimination of any kind and in the Olympic spirit, which requires mutual understanding with a spirit of friendship, solidarity and fair play…. Any form of discrimination with regard to a country or a person on grounds of race, religion, politics, gender or otherwise (my emphasis) is incompatible with belonging to the Olympic Movement.”

So yes, I want the Paralympics not just to end, but to be ended.  Abolished.  Included.  Different is Good, and Difference must be seen as an integral part of all the other Good things.

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 smelling of damp wool in the winter; baking hot and dusty-smelling in the summer.   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 we didn’t buy Cape fruit, marked out by its blue-lettered 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

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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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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.