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Who By Fire

Monthly Archives: May 2017

Common Trials: The Coordination Conundrum.

26 Fri May 2017

Posted by Kara Chrome in Uncategorized

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Tags

institutions, learning disability, medication, mothers, NHS

I’ve just spent 2 hours making phone calls to a dozen different people, trying to make sure that G will be safe during an upcoming hospital admission.  My phone line must be white-hot by now and it’s a good thing we have hard floors, or I’d have worn the carpet down to the canvas, pacing back and forth.  I have to stand and pace when I’m making this sort of phone-call; I need to keep my energy levels high in the face of incomprehension, it’s-not-my-job, and we-don’t-do-that.  Because I understand all too well what may happen – and what is likely to happen – if I don’t persuade people to see things from “just Mum’s” viewpoint, it becomes my job, and I have to do that.  All the while, there is a constant worry at the back of my mind, that if I rub someone up the wrong way, I may end up tarred with the ‘inappropriate involvement’ brush from paintpots like this recent case (where censure was warranted) and #LBInquest (12.14 onwards) (where it most definitely was not).

It is, as they say on Facebook, complicated.  Specialisation applies to administrative as well as clinical staff.  The admissions team schedules theatre slots, but you have to speak to the ward about bed spaces and to the departmental teams about staff complement.  The procedure that G is about to have is normally ‘day case’, but G’s complex interlocking medical conditions mean a three-day stay for pre-op stabilisation and post-op observation.  In turn, that means that the surgical team need to co-ordinate with respiratory and gastro, that an HDU bed must be booked, that the anaesthetics team need to be reminded that they have been warned of the extra wrinkles.

It’s very obvious from the letter advising me of the provisional admission date, that none of this has got through to the admissions team.  It’s a standard day-case admission letter, and if I felt inclined thus to waste my time, I could go through it furiously underlining every other word and muttering, “Wrong,” “Nope,” “Ain’t happening,” “In your dreams and my nightmares, sunshine”.

Instead, I burn through my phone bill, a deliberate smile on my face to help me pour bouncy-walk-induced positive energy down the line, talking to clerks, secretaries, nurses and answerphones, to get the whole thing orchestrated.  Each time, I repeat all the name, rank and serial number information with enthusiasm, as if I couldn’t possibly think of anything else I’d prefer to do on a summer morning.  I sympathise with technology glitches, make jokes, throw in a compliment here and fulsome thanks there.  I note numbers, names, who has agreed to do what.

Now, I have to wait and see (and maybe make a few follow-up phone calls in a week or 10 days).  I did all this four months ago, only for the procedure to be cancelled at the last minute.  It was scheduled for February half term and too many staff were away, taking winter holidays with their kids.  Of course staff need a work-life balance, their children deserve holidays, and I hope every last one of them had a thoroughly enjoyable time.

It’s just …. well, some of us get to go ski-ing.  And some of us feel we are permanently skating on thin ice.

Four Hours With Franklin.

16 Tue May 2017

Posted by Kara Chrome in Uncategorized

≈ 1 Comment

Tags

appropriate vocabulary, autism, institutions, kindness, learning disability

Now that E is away at University and unlikely to be occupying his room for more than a couple of weeks at a time, the children’s Papa – a tidy soul to the core – has ambitions to turn the space a little more guest-friendly, by turfing out some of E’s more juvenile possessions.  The practicalities of this aspiration have in the first instance fallen to me. To anyone who knows me, it will be no revelation to be told that I am absolutely useless at throwing things away.

How do I know whether E is still attached to the Lego star-cruiser that he so laboriously constructed eight years ago and which has been poised for takeoff from the top shelf of the bookcase ever since?  I dare not even touch it, lest I accidentally dismantle one of its delicate protrusions and put myself permanently in the dog-house.  Ditto the Airfix, the sporting trophies, the Warhammer sets.

“Just go through the books, then”, said P.  Nope.  While P sees a rummage through bookshelves as an chance to winnow out any that haven’t been read for a while, I see it as an invitation to reacquaint myself with old friends.  One doesn’t put old friends out the door.  From The Very Hungry Caterpillar to The Tale of Samuel Whiskers, to Wolf Brother, to Smith, to The Hunger Games, to King Hereafter, E’s bookshelves are a coded chronicle of his life with us, and each of them is still a darn good read.  So having pulled all the books off the shelves and replaced them, I settled down, slightly guilty, very exasperated, and in need of cheering up and soothing, with a couple from his mid-primary-school stage: Mij Kelly‘s Forty-Eight Hours With Franklin and Franklin Falls Apart.

The thing with good books, I find, is that on re-reading, you come across bits that resonate as new, because you have changed in the interim.  I first read Three Men In A Boat in my very late teens, on a Scotland-to-London train, disrupting the entire carriage with honks and snorts of mirthful recognition at the posing, mock-heroics and ineptitude of the young-adult heroes.  Twenty years later, with the benefit of knowing my brother’s personality-plus Jack Russell, I read it again and was convulsed by the contributions to expedition-packing – long-forgotten – of Montmorency the terrier.

Re-reading Franklin, the adventures of an accidentally-animated shop dummy, I laughed again, as I expected to, but I also began to see another layer that didn’t appear to me ten or twelve years ago.  Franklin, born into the world of humans as a six-foot baby, has no understanding of people or how things work, which leads him to repeated close shaves with law-enforcement.  He doesn’t talk, although he learns to repeat sounds, words and phrases that he hears.  He is literal-minded.  Asked to lend a hand, he does what any sensible shop-dummy would do: unscrews one of his at the wrist and passes it over.  He relies heavily on his flesh-and-blood siblings, Gertie and Joe, to protect him from the consequences of his unwittingly disastrous actions. They understand, from a knowledge of his past, what his probable intentions are and what his apparently out-of-context repetitions of stock phrases mean.  They know that when he says, “Ow, ow, ow, motorbike stars”, he means his legs are hurting and “Body no Perkins, body cow”, means actions were stupid (like the cows) but not malicious (like Mr. Perkins).

Well-meaning adults, such as Joe and Gertie’s parents, don’t quite get this, at least not until they have spent time with Franklin and begun learning to understand him.  And even then, the parents get it wrong, initially thinking only of how presenting papers on Franklin to international conferences will enhance their standing as scientists.  Strangers, pardonably, think Franklin is weird or rude when he addresses them as ‘Podgy’.  They aren’t to know this is his attempt at complimenting them for being a ‘prodigy’.  And some strangers, learning just how different Franklin is, see him as an opportunity for money-making: as a freak-show exhibit; as a subject for containment and study; as a tabloid newspaper headline.  In pursuit of their own aims, they ignore or dismiss Franklin’s rights to bodily integrity, autonomy and self-determination.

Echolalia, language differences and communication difficulties.  Incomprehension of the world around him.  Reliance on others’ attunement.  At risk of exploitation and/or incarceration.  Not quite human.  Sounds very familiar, doesn’t it?

Perhaps that’s why there was never a third Franklin book.  Perhaps, having created her living mannequin and seen him evolve, maybe without her realising it, into someone who looks very like an adult with learning disabilities and autism, Kelly just couldn’t imagine a future for him.

P.S. The Franklin books are long out of print, but occasionally resurface second-hand.
They are available together as an e-book called The Franklin Files.

Chains of Love.

12 Fri May 2017

Posted by Kara Chrome in Uncategorized

≈ 1 Comment

Tags

#justiceforallthedudes, #justiceforLB, Connor Sparrowhawk, learning disability, Local Authorities, NHS

More satisfactory news for #JusticeforLB recently.  The Slade House site, which Southern Health had been intending to retain in its property portfolio, with a view to selling it off and keeping the profit, is being returned, lock, stock and barrel, to Oxford Health. Thank the entity – or epithet – of your choice for that.

Keeping Slade House for Oxford wasn’t part of the original Connor Manifesto, but as Southern decided – or were pushed – to cut and run from providing services in Oxfordshire, the fate of the site grew in importance.  Sloven, although demitting from healthcare in Oxfordshire, still intended to hold on to all the Oxonian physical assets that had transferred to them at the start of the contract.  But this time, it wasn’t only #JusticeforLB howling, “You have got to be kidding me!”  Oxfordshire residents and local politicians were equally outraged. Under no circumstances could it be morally or ethically acceptable that Sloven would get away with (1) taking over a faltering service, (2) running it down further until it killed a patient, (3) using that failure as a pretext for ceasing to provide services, but (4) still keeping hold of the assets needed for alternative service provision.  Yet the drafting of the contract with Sloven had been so sloppy that, in strict legal terms, Sloven’s retention of the real estate was a distinctly plausible outcome. The Justice Shed began contingency planning for protests, should it ever look like happening.

Under pressure from patients, from local residents, from the press and from politicians, Southern Health eventually conceded that, in the circumstances, insistence on pocketing all the windfall gains from a patient’s death wasn’t tenable.  Nevertheless, the wholesale return of the Slade House site was still by no means a certainty.  As recently as April, Southern were still haggling to put conditions on the return of the site, so that they could take a cut of any profitability, were the site to be decommissioned subsequently.  Continued intervention, not least from outgoing MP Andrew Smith, finally got the matter resolved in Oxford’s favour.

‘Just glad I don’t have to chain myself to the fence‘, wrote Connor’s mother.

I know she would not have been alone there.  Whether #JusticeforLBers would have been able to encircle the whole site, Greenham-Common-Style, I’m not sure, (while smaller than the Common, it’s still a fair old skelp of ground) but I know we’d have had a good crack at it.  In any case, it seems there were enough people who cared sufficiently about LB, to form a virtual chain around the site and protect it.  A chain of love, if you like.

The question now, of course, is what should be done with it from here on?  On Horspath Driftway, at the southern end of the Slade House site, there is – or was when the Google  Earth images were taken – a sign saying ‘Oxford Health and Wellbeing Centre’.  If only, eh?  But it might be a good place to start.  The Connor Manifesto says that for all dudes – Oxford-based or not – there should be:

  • An effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided, rather than add-on, ad hoc and (easily ignored) specialist provision
  • Proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families, and what this means in terms of service provision in the widest sense and the visibility of this group as part of ‘mainstream’ society.

Back when LB was in the Unit, the struggles, headaches and sheer bloody terror of ‘transition to adult services’ was something I understood only with my head; not, as now, with my churning gut.  G was pre-adolescent, still very definitely a child, rather than a ‘young person’; the transition of the time was the move from primary to secondary school.  But as Pagnol says, “Le temps passe, et il fait tourner la roue de la vie comme l’eau celle des moulins”*.  It’s not just E who has grown and changed: G is at the threshold of ‘transition’ and we have been introduced to a new actor in the production of ‘The Life of G’: the 14-25 Officer.

I have to say, I do not know what this person is for.  Allegedly, he is there to smooth G’s path through ‘Preparing for Key Transitions’ and ‘Preparing for Adulthood’, but so far has contributed nothing: merely collated the documentation of a few things that were already being done elsewhere (and better) by other people.  I’ve asked, repeatedly, for an outline of post-16 options, and been told it’s up to me to scope all that stuff out.  So what’s the point of this officer?  He seems neither use nor ornament.

Equally, I am having trouble with the NHS.  I’m told that as G is not in a special school, paediatric services will cease at age 16.  Never mind that the blasted EHCP – including the H-for-Health component – runs on to 19 or even 25.  Never mind that said EHCP is novella-length, or that G sees so many different health professionals that we need a lever arch file with about two dozen dividers in it to keep track of all the appointments.  Never mind that the twice-yearly consultations with the developmental paediatrician are the only place where I can feel that here is another person, besides myself, who has an overall – if not finely detailed – view of all G’s health needs and direct lines into the secondary-sector specialists that G needs.  Nope.  Immediately G reaches blow-out-16-candles day, all this will fall to the GP (lovely person, but 10-minute appointments can’t substitute for the hour and a half or so that the paediatric reviews get) and the Learning Disability Community Nursing team.

That’s another thing.  Learning Disability ‘medicine’ is embedded firmly in mental health services.  You can’t get a consultant in Learning Disability as such, only a psychiatrist.  Children’s learning disability services are part of CAMHS and they don’t seem to deal with learning disability unless the child also has autism and/or behavioural problems.

And there’s the rub.  G isn’t autistic and doesn’t – at present, at any rate – have any mental health problems.  G is learning-disabled.  G has normal teenage anxieties about fitting in and being part of the group and what-will-I-be-when-I’m-grown-up.  Any additional difficulties with that are not due to mental illness, but to developmental delay that means G isn’t as proficient as the typical teenager at processing those anxieties (and goodness knows, it’s not easy even for the most ordinary and laid-back teenager).  All G needs to stay on top of things is extra time: more time to think about stuff, more time to get responses out, a bit longer to ease into being an adult.

It’s always been the same.  I can remember various, ahem, discussions with various professionals during G’s infancy, during which I was criticised for, allegedly, seeking my own gratification by keeping G over-dependent on me.  Not pushing hard enough for whatever the flavour-of-the-month goal was: weaning; walking independently; having support withdrawn at nursery; and similar things that G wasn’t yet ready for.
My conversation-stopper was, “You do know that G’s genetic condition causes developmental delay, don’t you?  What do you think that means in real life?”
“Erm, well, G’s development is, um, delayed?”
“Obviously.  AND?”
“Er, not quite sure what you are getting at….”
“It means <pause while I mentally insert, ‘you nincompoop’>, G needs to be a baby for a bit longer.”
And of course, when G was good and ready, all those things happened: but on G’s schedule, not anyone else’s.   I just wish there were somebody now willing to work with, rather than on, G.

I hear that since Cheshire West got a pasting in their DoLS case over P, an adult with Trisomy 21, the West Cheshire health bods have appointed a specialist health facilitator for learning disability.  This person will tap into mental health services if they are truly needed, but is primarily concerned with the overall health care of learning-disabled young people and adults: building a person-specific system, based on the presumption-of-capacity provisions of the Mental Capacity Act, to ensure that during ‘transition’, each learning-disabled person’s health-care and communication support needs are fully documented; that they are plugged in to appropriate health support systems; and that if they have to go into hospital at any time, full and accurate information goes with them, to prevent them being put at risk by ignorance.  If only there had been something of the sort for LB, so that the staff would have had his epilepsy, and What Not To Do, set out for them in unmistakable terms.

Apparently, the West Cheshire person holds the only such rôle in the country, so I presume that elsewhere, dudes with physical health problems are potentially still as much at risk as LB was.  But maybe the Slade House site could be repurposed – whether by reuse or by sale –  to provide a permanent Connor Sparrowhawk Learning Disability Health Facilitation Service in Oxfordshire.  And maybe it could, by example, spread learning disability good practice to every Health Trust.

I don’t know if Connor’s family would see that as a worthwhile memorial to their Laughing Boy.  I just have a picture in my head of the love that they have for him, forming the first link in a chain that would wind on endlessly, through other loving families and dudes, into the future.

 

LB: Another Day…In Court.

10 Wed May 2017

Posted by Kara Chrome in Uncategorized

≈ 1 Comment

Tags

#justiceforLB, Connor Sparrowhawk, preventable deaths, Sloven Health

It was confirmed yesterday that the Health and Safety Executive are going to prosecute Southern Health for the failings that led to Connor’s death.  To paraphrase Norman Lamb: Good, and about bloody time.

Still can’t get my head round why the Crown Prosecution Service did not pursue a corporate manslaughter charge: the inquest jury found that serious management failures at Slade House contributed to Connor’s death, so presumably the resulting breach of Southern’s duty of care towards him was deemed insufficiently ‘gross’.  Call me naïve or thick but I can’t see how much grosser it can get, than having systems which allow a clinically vulnerable person, carelessly, in defiance of known diagnoses and of recent events confirming clinical risk, to be put into a situation with a high potentiality of death.  Especially given that the risk, and the death, actually eventuated.

However, the Health and Safety Executive seems to have a good track record of holding companies, and their directors and senior managers, to account.  More slog for LB’s family, seeing this one through, on top of the wildly inappropriate General Medical Council (GMC) and Nursing and Midwifery Council (NMC) approaches to involving families in disciplinary proceedings.

I watched the news coverage of the announcement.  But as Huw Edwards launched into the introduction:  “…Connor Sparrowhawk, who was eighteen….” and the familiar images of LB as a giggling toddler and an ice-cream-eating teenager played over, I had an almost physical sensation of a bit of my mind slipping sideways.

Eighteen.  That can’t be right.  LB is three years older than E; he was in Year 13 when E was still in Year 10.  LB was a young man and E was still a baby-faced, coltish boy, lanky and spindly, with what appeared to be more than the standard complement of knees, elbows and shoulder-blades; still in school uniform, still to sit GCSEs, still to graduate into a ‘business dress’ chain-store suit and Sixth Form, still to choose and sit his A-Levels, still to make decisions about where to go next.

Now, E is an undergraduate. At nearly 20, with a full set of whiskers and (following a recent student-prank-gone-wrong) a No. 1 crop, he looks nearer 30.  He’s playing sports three times a week and hitting the gym in between, and even if his sixth-form suit hadn’t developed peculiar pinkish patches after repeated dry-cleanings, he still wouldn’t be able to wear it, as his chest and shoulders have packed on an extra six inches of muscle since he left school.  He’s revelling in having left behind the write-a-mark-a-minute constraints of A-levels, in being able to pursue his academic interests and do the research needed to back up his hypotheses, in finding a circle of like-minded mates for study and leisure, in being responsible for his own schedules, meals, laundry, and employment for spending-money.  So if E is this mature young man, Connor, surely, is approaching his mid-twenties?

Of course, he isn’t.  And it hits me all over again.  While LB has been an ongoing presence in so many lives, and while I have continued to think of him as older than, and therefore somehow growing up ahead of, my own son, Connor has in fact stopped.  Stayed as he was on that brilliantly sunshiny morning, forever an eighteen-year-old schoolboy, about to visit the Oxford bus company.

It’s not that I don’t know.  It’s just that the enormity and awfulness of the realisation seems new and raw, every time.  And as I remember to gasp in another breath, and blink away the prickle of tears, the screen is filled with an image of Connor’s mother, talking to the BBC’s Michael Buchanan.

“He should never have died.  And I… just miss him so….He’s left an unimaginable hole in our lives.”

*****

Appallingly, Connor is not the only one remaining in the same place.  Southern Health is still, still, overclaiming (otherwise known as outright lying) about its actions. “Tonight,” said Huw, “the Trust has apologised again to his family”.  However, and to whichever bit, of Connor’s family the Trust apologised, it didn’t include doing so, in words, to Connor’s mother.

Earlier @Southern_NHSFT told BBC News they have apologised again to us. Odd. Not heard a dicky bird. #JusticeforLB

— Sara (@sarasiobhan) May 9, 2017

If Sloven can’t get that right, after nearly four years, they can’t be trusted on any of the alleged improvements they’ve made, either.

Oh dear. @Southern_NHS, apologising to us unreservedly through a statement to the media ain't an apology. Seriously. #JusticeforLB

— Sara (@sarasiobhan) May 10, 2017

No learning. No honesty. No Trust.

Dear @Southern_NHSFT, can you please stop telling journalists you have apologised again to us. You haven't. Thank you. #JusticeforLB

— Sara (@sarasiobhan) May 10, 2017

See you in Court, Sloven.

 

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