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Who By Fire

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Who By Fire

Tag Archives: true stories

Robo-Flop

24 Wed Nov 2021

Posted by Kara Chrome in Uncategorized

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adult LD services, care in the community, caring, Personal Independence Payment, true stories

Had to phone the DWP to tell them that G had been evicted from hospital sooner than expected (PIP, reinstatement, for the purpose of).

After a solid 10 minutes of listening to options and irrelevant public service announcements broadcast on a RACALL-type system, I was then treated to an interrogation whereby I had to input information (G’s full name, NI number, DoB, address, GP details etc.) via an automated voicemail system.

Finally, I got through to a real human being (by this time, I had wandered off upstairs with the handset, brushed my teeth, made the bed and was sorting a load of laundry):

“Can I have the claimant’s name, please? And NI number/DoB/address/GP?”

“I’ve just given all that information to your robot-woman, hasn’t she passed it on?”

No.

It would appear that the entire automated system is there just to waste my time and the public’s money.

There are definitely days when one wishes one were in the proximity of these machines with an axe. Definitely days.

Adulting.

22 Sat Jun 2019

Posted by Kara Chrome in Uncategorized

≈ 4 Comments

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adult LD services, assessment, care in the community, Local Authorities, NHS, true stories

So cheesed off. It’s the longest day of the year and I think I can say without fear of contradiction that the gold-to-tailings ratio of events chez Chrome in the first six months of 2019 has been notably poor.

Between Christmas and Easter, Grenouille had two bouts of gastro problems that put every other system in G’s body out of kilter, and resulted in a fortnight of bed rest each time.  Bed rest for G means next to no rest for me; as the only adult in the house, Monday to Friday, I get to do 24-hour lone-pilot duty.  For a whole month.  Yippee.

The run-up to the Brexit-that-didn’t in February and March was hideous. Along with hundreds of thousands of other Britons, G’s continued existence relies on European-manufactured medicines whose supply could not be 100% guaranteed in the event of a no-withdrawal-agreement crash-out.  One of the most discouraging things about it, was Brexiters among the people I’ve thought of for decades as friends, telling me to stop drama-queening and whinging on, it would all be ‘fine’.  It didn’t seem to matter to them that I had done the research on current stocks, usage and likely blocks to replenishment, and was genuinely frightened for G’s life if there were to be chaos at customs and gaps on pharmacy shelves. 

In the last week before 29 March, I felt physically ill with apprehension.  The news lurched from the one million march, via a failed Chequers summit, cliffhangers of indicative votes, to desperate resignation-for-a-deal offers from the Prime Minister, before a last-gasp third meaningless ‘meaningful’ vote – on (non-)Brexit day itself – put leaving off for another month or two.  I lurched from feeling sick with fear, to feeling sickened with relief, knowing that it would all come round again in May, or June, or October.

G is expected to have some major surgery in the nearish future.  It was supposed to happen last year, and didn’t, and then it was supposed to happen in the early part of this year, and hasn’t, and at the rate we are going, it may not happen by Christmas either.  However, its alleged imminence has meant that we haven’t been able to plan anything.  Holidays, work trips, visits to friends and family, have all been put on hold or organised in a last minute scramble.  It’s an unpleasantly stuck-in-limbo way to live.

E came home in April, for the week before Palm Sunday.  I drove him back to university and returned home feeling cramped and numb after the long round trip. The next day, I could not feel my right leg at all from the waist downwards and my left leg was without sensation down the back.  I could still walk, but my proprioception was badly off.  My legs felt like your face does after the dentist gives you an injection for a filling – movable but dead.  The GP told me not to drive any more and referred me to the hospital for an MRI and ultrasound scans.  I spent the whole of Maundy Thursday as a day-patient on the orthopaedic ward, feeling somewhere between prematurely aged and ridiculously juvenile, as all the other women in my bay were in their 80s and 90s.  After enduring  a lot of poking and prodding, two claustrophobic passes through the scanner (being maddened by the beat of reggae played through the headphones clashing with the unsynchonised ‘Whum-whum-whum’ of the machine) and a remote consultation with the regional neurocentre, I was diagnosed as having half a dozen ‘dehydrated’ and bulging discs in my neck and lower back pressing on various nerves.

I asked about physio. You have to self-refer these days, a complicated process involving a massive online form and random appointment times.  I can’t do random; events have to fit into G’s timetable, or they don’t happen, so I spent a couple of weeks’ Carer’s Allowance on three 20-minute visits to a private physio instead. Two months and a lot of exercises later, I just have numb soles to my feet, a very sore right knee and a healthy aversion to carrying heavy shopping.

During the Easter holidays, the transition social worker and a commissioner from the CCG came and did an initial assessment of G’s future care needs.  They decided that a full assessment for continuing health care was needed, and came back in the May half-term, with another nurse, to do a full assessment. Three and a half hours of trying to explain all G’s healthcare needs, and it barely scratched the surface. The outcome arrived ten days ago: a resounding ‘No’.

Unfortunately there are some things that G needs help with, on a daily basis, that Local Authority social care workers simply will not be permitted to do. Even the medical respite Health Care Assistants are not allowed to do them, only registered healthcare professionals (i.e. nurses or doctors…) and, of course, good ol’ Mum and Dad. So the decision needs to be appealed, and guess who has to do it?  Not the transition social worker, who, you would think, would have a far better idea of these processes than I.  Nope, the whole shebang has been dumped in my lap, while the social worker, jammy besom, has swanned off on holiday.

I put out a slightly panicked appeal on Twitter and got some very useful feedback (thank you, peeps).  I contacted a disabled people’s support charity and a solicitor.  I compiled a list of relevant legislation, statutory guidance and case-law, tracked it all down on the Web and read grimly through it.  It was like being hurled back fifteen years to when I was desperately researching Statements of Special Educational Needs, up against the deadline of G starting school, except this time my deadlines are a lot shorter.  I got a snakes-and-ladders feeling that I’d slid right down the massive python that spans the board from 99 to about 8.

And today, on the longest day of the year, the first properly sunny day we’ve seen for well over a week, I sat down in front of the computer, with about 23 tabs open in the browser, and piles of paperwork all over the desk, and spent the best part of eight bloody hours composing a long appeal email.  Finally, it was finished.  I went to make myself a hard-earned cup of tea before G came home, and in the ten minutes I was gone, Windows decided to do a software update and restarted the computer. Without saving my as-yet-unsent email.  I stared at the screen in disbelief.  I rummaged in the ‘Draft’ and ‘Deleted’ folders, but I had been working on the email offline.  It was gone forever.

A key rattled in the door and G came in from College.

I burst into tears, big gasping sobs and howls.  G was, not unnaturally, highly alarmed, and did not find my explanatory wails in the least reassuring.  I babbled apologies, but I could not stop crying.  G presented me with the phone: “You need to call Daddy.”  I keened down the line at P for a bit, but he was struggling to make sense of the bawled and mangled syllables that assaulted his ears, and in the end I told him I wasn’t fit to be talked to and hung up.  G propped the iPad in front of me, a favourite song already open in YouTube. “Music might help, Mum, it calms me down when I’m sad.  Would you like a hug?” I accepted the hug, and listened to the songs, and after a while felt the misery and fury begin to recede. I still couldn’t remember a single thing that I had written.  I knew there were six heads of argument, but what they were I had no idea.  Every single one of them had vanished.  My head felt as empty as a blown egg.

Slowly and methodically, I began saving the URLS on the open tabs and closing them down. Couldn’t face trying to reconstruct a whole day’s work until I’d had some time off.  I stacked the paperwork and put it to one side. I looked out of the window at the sunshine on the garden and thought of cooking and the various other chores awaiting my attention, and then I thought, what the hell, and opened up the Spider Solitaire.  I am, I thought, sick to bloody death of adulting, I’m going to be mindless and irresponsible for a bit.

I was halfway through the second game when G came in and plonked a pink post-it note on my desk.  I deciphered the lopsided writing and thought, whatever anyone may want to say about G’s academic accomplishments, there’s no denying that my Froglet has Mensa-level emotional intelligence. G’s 18th birthday is still a few months off, but the adulting thing?

Nailed.

(Mum (k)now how feeling but never give up it is hard).

Feed A Cold.

05 Fri Apr 2019

Posted by Kara Chrome in Uncategorized

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Tags

Common Trials, medication, true stories

G: Mum, can I have a peperami, please?

Me: Yes, sure, help yourself, they’re on the second shelf of the fridge.

G (gleefully): I got a hot one. I think it’ll help with my cold.

Me (puzzled): I know chilli is supposed to be quite good for you, but I’m not sure it has specific therapeutic effects on the common cold?

G (patiently, as one explaining to the hard-of-understanding): It’ll make my nose run and then I can get rid of the gunk.

*****

*****

Helpful. NOT.

07 Fri Dec 2018

Posted by Kara Chrome in Uncategorized

≈ 1 Comment

Tags

independent living, learning disability, true stories, voices of disability

Ugh. Horrible evening yesterday. Grenouille arrived home and somewhat to my surprise I saw the driver as well as the escort hovering outside the door.
“Can we have a word with you?”
“Yes, of course, come in.”

It turned out that G had been in a right old state all the way back, after An Incident during a College trip. My heart sank.

The trip had been stressing G out all week. It involved planning a Christmas shopping expedition to a big multi-retailer centre: budgeting for tickets, purchases and lunch out, then taking public transport from College to the Big City, navigating the streets and the shopping centre, interactions with strangers and food that wasn’t from the usual pack-up. Not just for a couple of hours, in our little town, with a dedicated PA, but all day, somewhere large and unknown, with shared support. For G, it was a massive, massive ask.

G is not on the autistic spectrum. But lots of the things that autistic people find difficult – crowds, noise, bright lights and colours, movement, unfamiliarity and unpredictability – are also difficult, sometimes overwhelming, for G. And don’t talk to me about clothes with the wrong kind of seam/label/cut/collar/waistband/zip/buttons, unless you really want to listen to a half-hour disquisition on the difficulties of finding acceptable garments for G. Or the head-melt of trying to explain to a terminally honest teenager, who is constitutionally incapable of understanding hypocrisy and lies, why people sometimes say one thing and do another. Threading a way through the battering of public exposure, without blowing a gasket, takes huge amounts of G’s mental energy and is very tiring. Add in physical and mobility difficulties, and – well, I hope you can understand why I, as well as G, was apprehensive.

So the preceding night, G put a careful selection of essentials into a small backpack, one that would be lighter to carry than the school bag, and rehearsed all the things that would need to be done differently about medication and food. We spent about forty-five minutes discussing and painstakingly selecting an outfit for the following day that would combine a maximum of comfort with the sort of style that G felt was appropriate to display while in a group of peers. It then took a further 2 hours for G to wind down enough actually to go to bed.

It’s no good trying to hurry G up in stressful situations. If ever there was a proof of ‘more haste, less speed’, it’s G’s reaction to chivvying. And that was one of the pressures of the trip: public transport, which has big steps and no seatbelts, and which (unlike the car that can leave whenever G is ready), won’t wait if you’re late; and doesn’t turn up until it feels like it, even if you’ve been hanging around in highly-strung anticipation for ages. Instead of a bedtime story or singalong, we had to go through several iterations of what-if-I’m-late and what-if-the-train-is-late.

In the morning, G got up good and early, and hustled through breakfast (having chosen, the previous night, something that would be easy and quick to eat). Everything went merrily as a marriage-bell. G even had time to take everything out of the backpack, and put it all back in again, to be triply sure that everything that should be there, was there, before the taxi arrived.

I watched G walk off up the path, five foot three and six stone eight pounds of heroic, if unsteady-on-the-legs, determination. In drainpipe jeans, walking boots and a short, unpadded jacket instead of the usual puffa (which would be more awkward to carry about inside the mall), G looked even tinier and more fragile than usual, and I felt a nervous clutch in my middle.

But it was fine. No phone calls, nothing, until the taxi rolled home again.

It turned out that catching the train had been a relative doddle, but the arrival went badly wrong for G. As staff – one inside the train and one outside – were encouraging G to descend, slowly and carefully, to the platform, a man waiting to board decided to intervene. The intervention consisted of seizing hold of G around the middle, apparently with the intention to bypass the lengthy climbing process and simply plonk G on the platform. College staff, horrified, immediately shouted, “No!” and stepped in to stop him. G, after further, disorientated hesitation and a bit of hyperventilating, eventually made it down safely, and was whisked off, shopswards, in the group.

G did not want to spoil things for the rest of the group by making a fuss at the time, but seemed to have had a severe delayed-shock reaction once in the safety of the familiar taxi. The taxi staff were concerned, having never seen G in such a state. I thanked them for letting me know, and they took their leave.

“G, do you want to talk about it?”

Over a cup of tea, and a restorative slice of lemon drizzle cake, punctuated with the odd shout, and dashing off to sit wedged in a cramped corner for a few minutes to help contain the bad feelings, the story emerged in bits and pieces.

“I was scared, I didn’t know what he was doing.”
“He didn’t say anything and he didn’t look at me.”
“He didn’t ask my permission, he just invaded my personal space.”
“I couldn’t see his face because his hood was up, when he put his hands on me it was scary.”
“I was shocked, I don’t like people touching me without my permission.”
“It felt like he was pushing me around, it reminded me of when I was bullied.”
“It didn’t feel right.”
“I didn’t have time to think about it then, because we had to get over the bridge to the other place. I kept it all in because I didn’t want to spoil it for the others.”
“When I got in the taxi, it all came back to me and I couldn’t help myself from upsetting.”
“I don’t want to go back to College, I’ll be remembering in my body how I felt.”
“I want to go back to College, I want to see my friends and I want to talk to my pastoral tutor.”
“I don’t want to talk to about what happened, I want to talk about how to stop it happening again.”

Ouch. Finger right on the nub of it, G, and the most difficult problem to solve, because essentially, it relies on being able to assume that people you don’t know are reasonable, respectful and trustworthy human beings. And as you’ve just found out, that ain’t always a safe assumption. So,

Public service announcement for non-disabled people:

Do NOT lay hands,
unasked and without permission,
on a disabled person going about their business,
at their pace,
in a public place,
with a view to speeding them up.
You are NOT ‘helping’.
You are committing an ASSAULT.
Thank you.

On the ‘helping’ thing, several people since then have suggested that the other person was ‘just trying to help’. I’m not buying it, because G disagrees. G did not experience the contact as an altruistic attempt to assist, but as a coercive attempt to serve the other person’s wish for speed. I am not going to argue, and I will lambast anyone who does try to argue. There was disrespect enough in this attempt to deny G bodily autonomy, without compounding it by querying G’s right to emotional and perceptual autonomy. Besides, as G said last night,

“If he was trying to help, why didn’t he talk to me? Why didn’t he look me in the face? Why didn’t he treat me like a real person?”

Quite.

She’s Leaving Home.

19 Tue Jun 2018

Posted by Kara Chrome in Uncategorized

≈ 2 Comments

Tags

Commemoration, family, mothers, true stories

Last summer, my mother had some unexpected visitors. An unfamiliar car pulled into the drive and an unknown late-middle-aged woman knocked tentatively at the door.

“Hello, I’m so sorry to bother you, um, you see, this is the house I lived in as a child…”

“Oh, you must be one of the Batt children,” said my mother.

The visitor nearly fell off the doorstep in astonishment. “How did you know….?”

“We bought this place from your parents,” said Mum.

The lady looked even more knocked for six. “You remember them? The thing is.. we’re doing a tour of the places we lived, because it’s my mother’s ninetieth birthday. She’s in the car. Would you have time for a chat?”

“Of course!” said my mother, delighted. She invited them in, showed them all over the house and let them discover what was ‘new’ and what remained unchanged, served them a copious afternoon tea, regaled them with decades-old gossip about various village worthies of their mutual acquaintance, and waved them off with a new address in her bulging contacts book and a standing invitation to drop by in Dorset, should she ever find herself down that way.

That the Batts had managed to accommodate even more children than my parents ended up with, may have been one of the selling points of the house. At least we didn’t have to be stacked in bunk beds, four to a room. But this year, after almost half a century, my mother is selling up. A four-bed, three-recep., two-bath house, with a quarter-acre of garden and various ancillary buildings, is just too much for a lone woman in her early eighties. Especially a lone eighty-something woman with a dodgy hip.

Mum had a hip replacement just over four years ago. I (re)wrote Sloven-spun Shitespeak in the train on my way to visit her while she was convalescing from the operation. I found her on her usual irrepressible form and despite her crutches, she took me on a route-march round the local park, in quest of fresh air, a cup of coffee and some cake. Regrettably, the prosthesis doesn’t seem to have been fitted well and it has recently worked loose, distorting her leg and causing a lot of pain. Limping, her lips pinched tight to stop herself from complaining about it, bereft of the unflagging energy that previously took twenty years off her, she suddenly looks old. Second Youngest Uncle is taking her to his home for a few weeks, the plan being that she will stay with him until she has recovered from the revision surgery. Then she will move into a bungalow. But before arranging this, we needed to clear Mum’s house, so the prospective purchasers could move in as soon as they were ready, without us having to run around packing while Mum is immobilised. This weekend was the final push.

Mum had done a sterling job of packing loose items in tissue and butcher’s paper and stowing them into cardboard tea-chests. My sister, who lives fairly nearby, has been nipping over and getting things out of high cupboards and off the top of wardrobes for sorting, packing or dumping. Not a jar of preserves remained in the pantry, nor a sheet in the linen-cupboard. Various bits of surplus furniture have been donated to charity and two skiploads of miscellaneous unwanted items disposed of. Much of this weekend was about dismantling furniture that could be taken apart. I spent a whole morning mummifying mirrors and glass doors from bureaux or book-cases, in bubble-wrap. The afternoon was devoted to swathing all my father’s antique clocks: removing the pendulums and delicately stuffing the mechanisms with tissue to immobilise them in transit, before bubble-wrapping and boxing them.

Saturday evening was needed for emptying the attic, unpacking the contents of trunks and passing them hand to hand, bucket-chain-fashion, down the steep, narrow stairs from the attic and the wider ones to the ground floor. Then the trunks themselves came down two flights, to be repacked in the hall. The last (and heaviest) box wasn’t a trunk, but a squat chest with ten wide, shallow drawers. Each drawer, only three or four centimetres deep, was divided up into dozens of match-box-sized compartments.

“It’s a printer’s type-chest,” said Eldest Uncle, as he carefully transferred a drawer without spilling the contents. He fished out and displayed a couple of minute, oblong metal slugs, each with a back-to-front letter on one end. Most of the drawers, however, contained household hardware. A drawer full of nails and panel pins, sorted into the little boxes by size. Another drawer of screws, divided into steel and brass and graded by length and thickness. A drawer full of washers, metal and rubber; and a drawer full of odds and ends – jubilee clips, sink plug chains, various amperages of fuse, replacement bulbs for Christmas tree lights, all sorted and labelled as neatly and methodically as a museum exhibit. It was so characteristic of my father’s meticulous precision, that I almost looked over my shoulder for him, to pull his leg about it, before I remembered.

Sunday was about the garden. My mother’s container plants, which include things like acers and other trees in ginormous pots, have needed a whole van to themselves. We team-handled them onto a sack-barrow and trundled them, wobbling ominously, round the intricacies of the garden paths, from the courtyard to the side of the garage. We stacked garden furniture and the washing hoist.

When it was finally done, I went for a last walk around. I’ve not really been into the garden since Dad’s death. The garden was mostly his place – Mum did weeding and dead-heading, but Dad did landscaping, mowing, planting, pruning and harvesting; so despite all the pots going, most of ‘his’ garden is staying put. No-one can move the massive oak, or the mature maple with its metre-thick trunk (set in sixty-something years ago, as a sapling, by Mr. Batt) or the gnarly apple trees, left from when the land was a market-garden and orchard and cossetted by Dad into annual cropping, nor the stone- and brick-work of the ornamental raised beds that he built, now studded with sea-thrift, lavender and curry-scented helichrysum.

In my mother’s herb garden, the sage and thyme are in flower and full of bees. The rhubarb patch is flourishing and the gooseberry and currant bushes are jewelled with unripe fruit, but the strawberries, untended since my father died, are sparse and stunted. I thought I had found a more or less ripe one, but when I turned it over, a cloud of tiny flies mushroomed out of it, and all that was left was a damp, pink, hollow shell.

In the long grass under the orchard trees, oxeye daisies stood tall, and beyond was a drift of dark-pink dianthus and a firework explosion of mallow in the hedge. I took pictures. Lots of pictures. But you can’t photograph scents, and my father begrudged flowers growing room if they didn’t smell as good as they looked. The pinks smelled of cinnamon and further down the border, the mock-orange was in full, honey-scented bloom. I went from rose to rose, taking photographs and inhaling lungfuls of the delicate, powdery perfume of the pale-pink Albertine climber rioting along a fence, the sweetly spicy smell of the old-fashioned roses with their crimson-edged petals and the fruity, slightly acidic scent of the more modern varieties.

At last I came to the end of the garden, where the bonfire platform sits. I turned and saw my brothers, all lanky six-footers like Dad, wandering about on the other side of the vegetable plot, somehow dwarfed and isolated by the expanses of grass, foliage and flowers. I looked to the side of the platform, at the patch of turf that is still a different colour, and I wept. My brothers hurried over and hugged me.

“Tea,” said Youngest Uncle, firmly, tugging me in the direction of the house.

“I hope the new people like rhubarb,” said Eldest Uncle, eyeing the abundance of large, shiny leaves. He went over, pulled an armful of sticks and put them into his car. In the back porch, my father’s old, faded gardening anorak still hung, emptily describing his absence.

On Monday morning, my mother was up at 5.30, lining up dusters. The removal vans – three of them – arrived at half-past eight and as the men cleared each room, she hoovered behind their heels and wiped down paintwork and windowsills. The removers and my brothers rolled their eyes. Eventually, Mum was persuaded to relinquish the vacuum to my sister and go to a neighbour’s, to rest before her journey. At noon, the caravan rolled out, and after a number of stops, it arrived and was offloaded by 8.30 pm. Mum went to bed at nine. It’s sixty-five years since she left school and her parents’ house, and now she has left the home she knew for longest.

But in a garden that henceforth exists only in memory, my father is forever at the far end, his shirt hung on a branch, his lean, brown back warmed by the sunshine, whistling a conversation with the robin as he digs over his strawberry-patch.

*****

She’s leaving home / after living alone / for so many years.

Bye bye.

Game and Set Jelly.

07 Thu Jun 2018

Posted by Kara Chrome in Uncategorized

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true stories

Grenouille: “Mum, you have to help me get dressed! My arm’s sore!  And my foot!”

Me: “Oh, dear…”

G:  “I think it’s from PE yesterday.  I can’t walk properly!” (hobbles around the bedroom with a dramatically lurching limp).

Me: I’m sorry to hear that, what were you doing that made you so sore?”

G: “I was tennising.  (pause)  Can I have some of Dad’s smelly jelly?”

(Goes off to school, trailing a pungent wintergreen aroma of Deep Heat.)

*****

Alarming.

20 Fri Apr 2018

Posted by Kara Chrome in Uncategorized

≈ 1 Comment

Tags

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

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

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

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

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

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

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

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

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

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

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

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

Not Chicken-Feed.

12 Thu Apr 2018

Posted by Kara Chrome in Uncategorized

≈ 3 Comments

Tags

appropriate vocabulary, true stories, voices of disability

G: Mum, have we got any dried geese?

Me: Er…?

G: For making bread.

Lego Lessons.

28 Wed Feb 2018

Posted by Kara Chrome in Uncategorized

≈ Leave a comment

Tags

care in the community, family, true stories, voices of disability

Grenouille got a load of fancy Lego for Christmas.

Does it make me sound antediluvian to say that my kids’ Lego is not at all like the primary-coloured 2/4/6/8-spot blocks I remember playing with?  It’s all movie tie-ins; you have to follow whole books’-worth of immensely complicated diagrams in order to achieve the final creation.  Eldest has a Star Wars battle cruiser still reposing on the shelves in his now-abandoned-except-in-the-holidays bedroom, while G is making something from the ‘Lego Ninjago Movie’.  Yeah, me neither.  G and New(ish) Support Worker took themselves off to see this Ninjago caper one Saturday afternoon, and I haven’t the foggiest what it’s all about.

Anyway, along with the massive main item, G has a crowd of tiny Lego figures, mostly vaguely Oriental-looking, and one of them is carrying two buckets, each smaller than the lid of a toothpaste tube, one at either end of a shoulder-pole.  The buckets/pole combo did not come ready assembled, although the buckets themselves already had their handles on.  Unfortunately, push the buckets onto the pole the wrong way, and the handles detach; as G discovered this afternoon.

“Mu-um!  Can you help, please?  Fix this?”

I sat trying to wrangle a centimetre-long handle onto the minute bucket.  I’d get the tiny dimple on one end of handle lined up over the pinpoint-sized cone on the side of the bucket, but it would slip off before I could get the other end to click into place.  After several unsuccessful minutes, I said, “Blimey, G, this is really difficult!”

G regarded me with a weary air and sighed.

“Welcome to my world.”

*****

*****

Shitstorm.

25 Thu Jan 2018

Posted by Kara Chrome in Uncategorized

≈ 6 Comments

Tags

#HandleyInquest, 'supported' living, coroner, court proceedings, Down syndrome, family, human rights, motherblame, NHS, preventable deaths, siblings, true stories

Right, you lovely lot, a few words, please. The ones from this book, mostly:

You may have noticed I indulge in the occasional sweary. Not desperately frequently; I was brought up to euphemise rather than curse. (My sister once acquired a boyfriend whose father turned out to be a Church of England vicar. My parents invited him and his wife to dinner; I was in the middle of a story – indeed the middle of a word – when my gentility reflex kicked in on autopilot:
“… and when we came out it was absolutely piss-sisting down…”. The boyfriend, who was a squaddie, burst out laughing. His father eyed him sternly. “Don’t you try that, son; you don’t have the aplomb to carry it off.” My Dad suppressed a grin; my mother looked bewildered.)

To be honest, I’m not much of a one for the f-word, except under extreme provocation. I don’t have the right accent for fluent and habitual use, especially in writing. I don’t care for the c-word and other specifically female words used as terms of abuse. Females are subject to far too much abuse in general, without having bits of their anatomy used as synonyms for ‘vilest shame’. It’s for much the same reason that I object to racist abuse or the r-word and all its nasty ex-medical cousins. But bloodys, arses, bastards – you’re welcome. And of course, my favourite, the excremental expletive in all its forms. Shit shite shitty shitey crap.

I’m sorry if it offends you, and can only suggest that if you are discommoded by it, you craft yourself a virtual clothespeg for your mental nose, because for the next three weeks this blog is going to be neck-deep in the stuff, in forms both literal and metaphorical, conceptual and weightily material, temporal and behavioural. And the shitty behaviour, I can tell you now, is not coming from people about whom behavioural concerns are usually expressed.

This is the story of the life and death of Richard Handley, whose inquest started on Monday in Ipswich. A life pervaded, shaped by and ultimately lost to shit; and where the dishing-out of shite, particularly to Richard’s family, didn’t stop with his death.

Richard was suspected from an early age of having a condition called Hirschsprung Disease, where the person lacks fully developed motor-nerves to part of their bowel (usually the lower end of the large intestine, near the anus). Wherever the nerve-endings, known as ganglions, have failed to develop, the gut cannot properly push digested food along; the nerveless areas do not relax normally to allow for its passage. As a result, the affected portion tends to contract, leading to a build-up of faeces above the narrowed area. Stool that hangs around in the guts for any length of time loses water and becomes hard, making it even more difficult to push out. After a while the hard stools can become ‘impacted’: cemented together in a solid mass that stretches (‘distends’) the bowel like an overfilled balloon. Sometimes, liquid faeces will seep around the blockage, giving the impression the person has diarrhoea rather than constipation. It’s vital that people at risk of impaction eat high-fibre foods, drink plenty to keep their stools soft, take stool-softening and laxative medicines if needed, and have enemas to wash out turds if they are not able to take a daily dump. Otherwise, the blockage can back up until their guts are filled end-to-end, swollen with rock-solid shit that presses on and squashes other organs, interfering with or damaging those other organs as well. Sometimes, bits of bowel can become so stretched or squashed that they lose their blood supply and die off, leaving a hole in the gut (‘perforation’). This is life-threatening.

To make a definitive diagnosis of Hirschsprung Disease, doctors look at X-rays of the person’s bowel to see if there are restricted and distended areas, and do an operation to take a small sample (‘biopsy’) of the lining of the gut at the point where it narrows. They then examine the sample to see if the ganglion cells are missing.

Hirschsprung Disease is rare. It affects more men than women, and it’s commoner among people with Down Syndrome than among the general population. Richard had Down Syndrome. He also had moderate to severe learning disabilities. His local hospital, James Paget in Lowestoft, advised after X-rays in 1998 that Richard should have a biopsy to see if he had Hirschsprung disease. Eventually, the clinicians decided against it, partly because they felt that the procedure was potentially distressing and/or physically risky for Richard, partly because they did not have suitable laboratory facilities for preparing the sample for examination under a microscope, and partly because Richard’s family managed his poo problems superbly, though a combination of diet, medication, bathroom physiotherapy, and turning the unpleasant aspects of his condition into fun for Richard.

Richard had a keenly developed sense of humour. He liked Mr. Bean, slapstick and visual humour, toilet and fart jokes. His family accompanied him on visits to the lavatory. “In order to have a bowel movement,” explains his mother, Sheila, “Richard needed his mind taken off what was happening, so he could relax and let go. That was the point of the games and physio. The games were things like throwing something in the air so he reached to catch it and giggled at the game. It meant he relaxed and wasn’t worried about going for a poo or if it might hurt.”

In spite of this careful management, in the late 1990s, Richard needed hospital procedures on several occasions to empty his bowel and to try to prevent future problems. At around the same time, his behaviour deteriorated and he was referred to psychiatry by the Learning Disability nurse because he was refusing to get out of bed, he was incontinent and he appeared scared. The psychiatrist diagnosed Richard with a depressive illness with psychotic features. Various professional people noted that the acceptability of his behaviour went up and down, as did the swelling of his belly. No-one seemed to wonder at this time if there might be some sort of physical-to-behavioural causative link. I don’t know about you, but if I had a bellyache and kept involuntarily soiling myself, I might be quite inclined to take to my bed and get snarky with anyone who tried to winkle me out of it for what seemed to me to be no good reason. But then I don’t have a learning disability, so people would have to look for some other explanation than ‘learning-disability-related mental illness’ for my sudden change in bedroom and bathroom behaviour.

Richard went into respite care in 1998 and then in late 1999 into a residential home. As part of his placement, he had a Statement of Health Needs, which specified ongoing/diligent monitoring of bowel function and management as part of his primary and secondary care needs and identified maintenance of bowel management programme as part of his non-negotiable, quality-of-life needs. Richard was given medication to treat his mental-health difficulties. Although some of these medicines had the unfortunate side-effect of causing constipation, through a combination of diet, medicine, exercise and meticulous (and meticulously-documented) bathroom support, Richard remained healthy and happy for several years. The agreed protocol was that if, in spite of his fibre, fluid and laxatives, Richard failed to have a bowel movement for three days, the District Nurse would be called in to do an enema.

Sometime in the mid-to-late 2000s, Richard’s care was altered. His Statement of Health Needs went into an old file that was no longer referred to. The District Nurse no longer came to do enemas. Initially, this was because his diet and medication meant she was not needed, but even when he began to miss daily poos, she was not recalled. A misunderstanding of the Mental Capacity Act by Richard’s support staff meant he was allowed to make very unwise decisions about the food he would and would not eat, even though he had been assessed on a number of occasions as not having the capacity to make health decisions. Even with support, Richard was not able to understand, retain, use or weigh information relevant to his health in making decisions about his diet. He should have had Best Interests decisions made for him, instead of being left to make choices that transformed his diet from high-fibre, high-fluid to low-fibre, low-fluid. The pursuit of the ‘independence’ agenda for Richard also meant that he was not accompanied to the bathroom any more, and proper monitoring of his bowel habits fell by the wayside. As his food became less and less healthy for his bowels, Richard became more and more unwell. The picture painted by the Serious Case Review of Richard at this time, (here given the pseudonym ‘James’), the ‘cheeky chappy’ who dearly loved a bit of toilet humour, is utterly heartbreaking

Serious Case Review: James (Flynn M & Eley R). October 2015, Suffolk CC SAB.

Around the same time, administrative changes in the Health Service, poorly implemented in respect of Richard, left his psychiatrist as his main medical contact. The psychiatrist did not do physical assessments of Richard and did not liaise with Richard’s GP to ensure that his physical as well as his mental health was being monitored. Both the psychiatrist and the staff where Richard lived interpreted his increasing lethargy, apathy, non-co-operation and poor self care, as mental rather than physical health problems. The staff, who did not have medical expertise, did not realise that Richard’s chronic constipation was not being dealt with by his laxatives, which were causing ‘overflow diarrhoea’: seepage of liquid poo around and past the unmoving solid stools.

In 2010, Suffolk deregistered a number of care homes, redesignating them as ‘supported living’. Richard’s care home was one of these and he signed a tenancy agreement, although his family queried his capacity to do so. The changes were supposed to give ‘service users’ more control over their own budgets, more choice in their activities and more independence. The rebadging also gave Suffolk financial advantages – for example, the newly ‘independent’ tenants were expected to organise their own cleaning; the Council did not have to pay the provider for this any more. The house promptly became untidy and dirty, as the residents were not capable of running a cleaning rota and staff were no longer paid to assist with maintenance. Another area of cost saving was in the inspection régime: while care home providers have to be inspected facility-by-facility, looking at individuals’ care plans, supported living providers are inspected centrally. This less onerous inspection regime was also less expensive. Someone whose health and care management was as complex as Richard’s, really should have had an alternative system of monitoring set up, to look at his individual needs and whether they were being met. Instead, the various people looking out for him – the home staff, GP staff, hospital staff, day centre workers, Richard’s family – were left doing the best they could in their own areas. No-one had an overall picture.

Richard’s family were told his health care would remain the same; they did not know (and had no way of finding out) that his health care and monitoring was already much reduced from the levels specified in 1999. They remained involved and contributing, but were not party to information about Richard’s life when they were not around. Richard limped on through 2011 and the beginning of 2012, his mounting uninterest in life ascribed, at his frequent medical appointments, to poor mental health and possible dementia.

On 10 November 2012, Sheila Handley had lunch with her son. She was worried by his swollen abdomen. The following day, Richard saw his father, who discussed, with one of Richard’s support workers, the grotesque size of his belly. On the 12th, Richard’s parents accompanied Richard and a support worker to a psychiatrist’s appointment. The psychiatrist had a high level of concern about not just the size, but also the hardness of Richard’s abdomen, saying he needed an emergency GP appointment. Richard did not get an appointment on the 12th and on the 13th saw a GP registrar, who did not know his history of constipation, and prescribed a large dose of laxatives, even though Richard had been taking laxatives and stool softeners daily for almost all his life. The psychiatrist, meanwhile, arranged an ATU admission for Richard, to address his declining mental health. On the 14th, Richard was taken to the ATU. He seemed unwell: pale and withdrawn. On arrival, Richard had the usual admission examination, and the state of his belly so alarmed the ATU staff that in the evening, he was transferred to A&E. He was found to have massive abdominal distension; his rectum was impacted with faeces and and an X-ray showed his whole colon was distended with impacted faeces.

On the 15th, Mr. Handley senior signed the consent forms for Richard to be examined under anaesthesia. Although the hospital recognised Richard’s lack of capacity, they do not seem to have made best-interests decisions and adjustments to their procedures. Richard was cannulated and anaesthetised under six-person restraint, screaming in terror. 10 kilos of impacted faeces – that’s 1 stone 8 lb in old money – were removed just from Richard’s rectum. When he woke up, he was, unsurprisingly, ‘non-compliant’ with treatment. In his shoes, I think I might have been a touch unco-operative as well. In fact, I’m pretty sure my mental processes would have run something along the lines of, “If one of you white-coated fuckers comes near me again, I’m going to sodding-well BITE you.”

Not that Richard was in much of a state for biting. Although his rectum (the part of his large intestine just above his anus) had been cleared, his colon (the rest of of his large intestine) was still full of solidified shit. He was given drinks but vomited violently and copiously, then passed ‘massive’ amounts of stool but still had a hugely swollen belly. Twenty-four hours after his operation, Richard’s vital signs were decline; his breathing became ragged, his heart-rate was irregular and he had not peed since he came out of theatre. He was catheterised. His oxygen saturation continued to deteriorate. Another X-ray showed his colon was blocked and his small intestine was also jam-packed. Both were pressing upwards into his chest, restricting his breathing. This pressure was also the likely cause of his vomiting; what he was vomiting was faecal matter. He needed to have his guts cleared out more, to take the pressure off his lungs. In the early hours of November 17th, the ITU consultant was called in, but before he could begin treating Richard, Richard went into cardiac arrest. Resuscitation efforts failed. By 2.15 a.m., Richard was dead.

On the first day of Richard’s inquest, the court heard from Richard’s mother, outlining his story. The pathologist who did Richard’s postmortem, Dr. Jason Wong, stated that Richard had died of a cardiac arrest, caused by asphyxiation resulting from aspiration of gastric contents that were vomited because of a large bowel obstruction that was in turn due to faecal impaction. In spite of the manual emptying of his rectum and his later passage of ‘massive’ quantities of stool, Richard’s guts were still so full of shit that they interfered with his breathing and caused him to throw up. He breathed some of the vomit into his throat and the main tubes leading to his lungs, and it stopped his breathing. “A description given in a meeting with the family by @IpswichHosp said Richard drowned in his own vomit”, said Sheila Handley’s counsel. “Is that a fair assessment in layman’s terms?”. “Yes,” said Dr. Wong.

Finally, Detective Superintendent David Cutler of Suffolk Police gave an account of his involvement in the safeguarding investigation into Richard’s death and detailed all the possible offences that he had considered – and then discounted – in relation to the events. Nobody had deliberately set out to kill Richard. Gross negligence manslaughter did not apply; there was not sufficient neglect for it to be considered criminal. He asked for an independent expert’s opinion on wilful neglect, but the expert only assessed Ipswich hospital and felt unable to comment on Richard’s care (and later housing) provider, United Response, and other services. The DS identified failings in service co-ordination in Richard’s daily life, and failings in his hospital care, in particular the length of time it took to refer Richard to more senior doctors, but felt that none of these met the Crown Prosecution Service’s evidential ‘Full Code Test’ for prosecution. He considered corporate manslaughter, but felt breaches of the ‘duty of care’ owed to Richard by various organisations were best addressed by regulatory authorities, not the justice system.

I have to say, I don’t hold out much hope for learning by and from regulatory organisations. I’ve encountered plenty of individuals who seem to be doing their best to re-set their personal thinking patterns and expectations, but the overall impression is of fragmentation. Richard’s family told everybody that he needed extra care, but didn’t know – couldn’t have known – that over time, most professionals seemed to have assumed that somebody else was taking main responsibility. In actual fact, there wasn’t anybody who had an overall view and nobody was ensuring that routine care was being done properly. In particular, Richard’s family, the repository and guardians of his life-history, were cut out of the documentary loop, while the information they had so painstakingly collated and transmitted was shelved. Suffering the consequences of ‘memory loss’ by the institutions into which they are moved seems to be a frequent factor in the deaths of people with learning disabilities. It was definitely in play in the deaths of Connor Sparrowhawk, Nico Reed and Deborah Molloy. It seems to have been a factor in the death of Thomas Rawnsley, who was seen by his family shortly before his death to be so poorly that he was falling asleep into his dinner, but whose concerns, arising from their experience of his previous bouts of severe respiratory illness, were dismissed.

Unless the common threads in these (and many other similar, not necessarily fatal incidents) are addressed and remedied by building in system failsafes, I have a nasty notion there will be plenty more deaths attributable to diagnostic overshadowing and to insufficient patience and attention being devoted to learning-disabled people. I checked the online record of the Coroner’s Prevention of Future Deaths report from Connor Sparrowhawk’s inquest. The diagnostic overshadowing leading to death in his case concerned his epilepsy, and the Coroner asked that Southern Health Foundation Trust, in whose (non)care Connor died, reconsider how they managed care for epileptic patients. In early January 2016, Katrina Percy, the then-CEO of Southern, wrote to the Coroner saying that they would send him a copy of their new ‘Protocol for the Safe Bathing & Showering of People with Epilepsy’, then in final-draft form, ‘as soon as it is ratified’. There is still no copy of that Protocol on the Coroner’s website, so anyone outwith Southern who might be looking for some best-practice ideas about Preventing Future Deaths from epilepsy is out of luck. Two years, mark you, after Connor’s inquest and the publication of the Mazars report caused nationwide ripples; and nearly four years after Verita produced the report that first made it officially clear that poor epilepsy care lay behind Connor’s death.

I want to finish this post by looking at how Richard’s mother was questioned on this first day, by Counsel for the publicly-funded bodies. Bear in mind that Sheila Handley, while remaining very much in her son’s life and supporting him closely, had not been formally consulted about his wellbeing for over a decade and was not included in the circulation of Richard’s health documents. Richard himself could not read these, nor relay their contents to his mother, instead relying on his caregivers to manage for him.

Mr. Hugh-Jones, counsel for the GP registrar who attended Richard on 13/11/12 started by questioning Mrs. Handley on the suspected Hirschsprung’s disease and the lack of a formal diagnosis. Tests, said Mrs. Handley, were delayed while it was felt management was adequate.
Hugh-Jones went on to ask about Richard’s verbalisation of pain. These questions actually went to capacity. Mrs. Handley steadfastly reiterated Richard’s difficulties with comprehending consequences, adding that explanations were, however, useful in securing Richard’s compliance with treatment.
Hugh-Jones asked questions about the notes from the visit to the psychiatrist on the 12th, suggesting that these showed family concern was misplaced:
“…tummy looks better…” “It says tummy looks bigger,” corrected Mrs. Handley.
He queried her recollection of events: “The carer says <the psychiatrist> didn’t touch the tummy.” Mrs. Handley remained poised and dignified. “I don’t think that’s right. My recollection is that he did,” she said.
Hugh-Jones queried Mrs. Handley’s drawing of inferences around the state of Richard’s abdomen in the week before his death. “You weren’t there on the Tuesday when Dr Tajammal saw Richard, were you?” Mrs. Handley permitted herself a touch of asperity. “To be asked to comment whether <his tummy> was static or progressing, I’m getting very confused. He was very distended on Monday and Wednesday, he didn’t lose that distension on Tuesday, if that’s what you’re suggesting? That’s not how it works.”
Mr. Hugh-Jones came back swinging on Richard’s breathing problems: “When you saw Richard on Wednesday he was breathing perfectly normally wasn’t he, so we know it’s progressive?” “Yes,” said Mrs. Handley. Counsel appeared not to process this. “We know he was suffering respiratory symptoms by Wed 16 Nov, we know it was progressive,” he said, adding, “However you might want to shy away from that.” Mrs. Handley neatly sidestepped the insinuation and landed a flush hit: “I’m not wanting to shy away from anything, I’m very much in agreement.” Hugh-Jones seemed slightly flustered by this and proceeded to get Mrs. Handley to flip back again through the bundle so he could query her concerns around Richard’s proposed discharge.
The @HandleyInquest tweets from George Julian record the exchange as follows:
HJ: Were you in the hospital on the morning that Richard declined? SH: I was not, but I am referring to texts I received from my ex-husband.
HJ: Have you had it reported by your husband that Richard had passed faeces? SH: Yes, but he was concerned Richard’s abdomen was still very distended. The junior doctor asked John whether his tummy was normally like that and John told him, no, it wasn’t.
Mr. Hugh-Jones retired from the ring.

Mrs. Handley then had a bout of verbal fencing with counsel for United Response, the housing and care provider:
UR: Would welcome your thoughts on bowel movements in 2011 and 2012. Did you notice a difference in Richard’s willingness to go to the toilet? SH: No, not at all, when he needed to go when he was at mine he was always very happy to have me in the bathroom with him.
UR: He’s been described as being able to go to the toilet independently. SH: I wouldn’t agree with that, especially for bowel movements, he wasn’t capable of cleaning himself up.
UR: Was he able to deal with the bowel movement itself but not clear up afterwards? SH: In essence yes, except in order to have a bowel movement, he needed his mind taken off what was happening so he’d relax and let go – which was the point of the games and physio.
UR: Was that something you discussed with staff at all? SH: Yes, when we had the meeting with Suzan Collins and Clara Paolantonio @unitedresponse.
UR: Was that later discussed with staff in 2012? SH: No, I had no reason to believe it needed to be.

I remembered Sara Ryan at her son’s inquest. Counsel clearly knew he was on dodgy ground insinuating that it was Sara’s, not the staff’s, job to keep Connor safe in the Unit: “I preface this is not a criticism but want to make sure what you say about it, do you accept that during Dr J’s admission of Connor and your call with the Occupational Therapist you… didn’t mention the need to observe Connor in the bath?”
Even in compressed tweet-form, Dr. Ryan’s breathtaken outrage and pain came screaming through: “Yes, but can I add it didn’t occur I’d need to raise with specialist staff? This was a unit that cost £3,500 a week to keep Connor in it!…It would have been a bit like asking a school teacher who took one of our kids on a school trip not to let them loose on a motorway.”

Sheila Handley, I thought, has definitely learned from watching Sara Ryan’s ordeals at the Connor’s inquest and at the GMC tribunal considering Connor’s psychiatrist’s fitness to practise. She’s learned not to get discombobulated by the can-you-just turn-to-page-x trick; she’s learned the value of the “Yes, but…” response; she’s learned how to contradict, politely, statements she considers inaccurate; and she’s learned how to shovel attempted slopey-shouldered offloads of responsibility, right back to where they belong.

Two things leap out at me from this. One is just how much of a nonsense the concept of a ‘non-adversarial’ inquest is. Families want answers, but public bodies want to swerve liability and manage reputation. If their hired gun chooses to take the route of blaming the person’s family, (usually via motherblame, it has to be said) the organisation doesn’t care, as long as the ploy works out for it. In consequence, family witnesses like Sheila Handley have in effect to quasi-professionalise themselves through a form of (self)-training, in order not to be annihilated by the process/ordeal.

The second is that while the organisations are busy fending off responsibility, they will have less attention to devote to improvements for similar patients who may now be at risk. Circling the wagons, not reflecting and changing. It is more than sad, it is sickening to think that the most salient ‘learning from deaths’ to come out of Connor’s drowning may be, not the lesson that Sara Ryan hoped the NHS would learn: How To Provide Good Healthcare To Learning-Disabled People And Avoid Them Dying Prematurely, not the lesson that Mr. Coroner Salter wanted Southern to learn: How Properly To Care For Patients With Epilepsy, but this lesson for other bereaved families: Learn How To Outflank A Barrister At Your Child’s Inquest.
­

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