The Generic Parent.

Grenouille (upstairs): Muuum!

Me (from below): Yes?

G: …..

Me: G, what do you want?

G: What?

Me: You ‘Mummed’ at me. What do you want?

G: Nothing. I was Mumming at Dad.

Me: …..!!

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Nigel, Oily Rags and Engineers.

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I spent part of my paid working life in the Chief Executive’s department of a Local Authority and one of my duties was to arrange Council Committee meetings and organise agendas and reports for circulation to statutory deadlines. Official papers had to be circulated at a prescribed minimum interval in advance of the meeting, or it could not lawfully take place. Copies of the agenda and non-confidential reports had to be made available to the public, although for most meetings, the only person who wanted to see them was Nigel, the twenty-something junior reporter from the local paper who was tasked with reporting on Council matters.

I spent many an hour sitting in the same Council chamber as Nigel, he in the public seats, me in my Committee-clerk’s place next to the chairperson, listening to debates of varying coherence, but sometimes Nigel didn’t turn up. If he couldn’t make it on the day, he would phone me the following morning to ask if any of the resolutions had varied from the officers’ recommendations. Usually they had not, which meant he could file his report, written in advance of the meeting on the basis of the agenda papers. Any variations meant he just had to do a little tweaking and could still make his copy deadline.

The Members were always a bit miffed when Nigel failed to show up. They seemed to think it was cheating to report on a meeting he hadn’t attended. I, on the other hand, had a sneaking sympathy for him: why should he spend two or three hours of his life listening to people laboriously make the decisions that someone else had already written out for them? I did not mention to Members that I found using the Nigel method of writing – in my case draft minutes – in advance of the meeting, was an excellent way to earn a reputation for diligence and efficiency.

Then the Council found itself in a legal pickle and various senior officers and leading Members were required to attend the High Court for several days. The Members were very miffed to discover that Nigel had gone to the trouble of catching the same early train as themselves, in order to report live, as it were, from the proceedings.

My sympathy for Nigel blossomed into frank admiration. He seemed to me to be doing things just right, journalistically speaking: he knew his stuff; he did his research and double-checked it; he made no bones about doing anything and everything he had a right to do; and he had the savvy to realise that if you stand by your rights and ignore the ‘unwritten rules’, they will just have to be rewritten not to include you.

After Annual Council one year, I managed to corner Nigel over a pint and got him to expand on his journalistic principles.

“This stuff matters. It may be ‘only local news’, but there’s tens of thousands of people with a vital interest in it. Do your leg-work. Ask some questions to which you already know the answers so you can check for truthfulness. Always look as if you know what you are doing. Never ask permission – know what you can do and just go ahead. Cultivate your contacts at all levels, but don’t let yourself be fobbed off with oily rags (here he looked rather apologetic) if you need to speak to the engineer. You can’t refuse to dig over dirt, the gold is often buried. And if you think a piece might need to be shown to legal, then it definitely needs to be shown to legal.”

With all that in mind, and with a nod to Nigel, here is a letter to a local Authority that I was annoyed into writing last week. The specific Council shall remain nameless; it could be anywhere in England.

To: Chief Legal Officer
NE Whare Authority
Council Chambers
Whareabouts.

Copy to: Manager, SEN Transport
Copy to: Lead Member, education & children’s services

Re: SEND Transport Services to <schoolname>
<Child’s name> <Child’s date of birth>

Dear <CLO’s name>

I have recently been having somewhat fruitless discussions with your colleague <SEN transport manager’s name> and I wonder if you may be more successful than I in explaining to him that the course of action he proposes to take is not within his legal powers as an officer of the Authority? I feel he and his department have failed to grasp the undesirable consequences for N. E. Whare of persisting in their current practice.

He contends that if my child is in receipt of mobility allowance or has a Motability car, I am expected to provide his/her transport to and from school. Apparently this is in pursuit of something called ‘least restrictive transport options’. I cannot find any reference to this entity in the relevant legislation, namely Section 508B of the Education Act 1996. As you will know even better than I, any guidance, statutory or otherwise, and any Authority policy, MUST be held subsidiary to and operated in accordance with the provisions of primary legislation.

The obligation under S.508B EA 1996 is that eligible children – of whom my child is one, by reason of disability – must be provided with free transport to school arranged by the Local Authority. Subsection 4 states that certain other arrangements may be made with parental consent. I refuse consent to any such arrangements and I require the Authority to fulfil its statutory duties forthwith.

While I am sure that <local Nigel’s name> would welcome a change of scene from the Council chamber to the High Court for a day, I’d be surprised if NE Whare Authority will relish being reported as one that has obliged the family of a disabled child to go through the trouble, stress and expense of bringing judicial review proceedings, in order to force the Authority to fulfil its statutory duty by providing transport in accordance with legal requirements, as it should have done in the first place.

I trust therefore that from now on, neither I nor any other parent in NE Whare’s area will find the Authority trying to land us with obligations whose imposition is ultra vires.

I look forward to receiving transport proposals for my child that are consonant with the relevant legislation.

Yours sincerely

<Parent’s name>

She’s Leaving Home.

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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.

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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.

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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 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.

Lego Lessons.

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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.”

*****

*****

Injustice For LB.

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The MPTS hearing concerning the fitness to practise of Valerie Murphy, the psychiatrist who was the (ir)Responsible Clinician at STATT during LB’s (Connor Sparrowhawk’s)  time there, finished on Wednesday 21 February.

Having made a determination of facts in August 2017 and a determination of impairment in the November of the same year, the Tribunal reconvened on 19 February to deliver its decision on sanction.

It’s worth remembering that when Murphy appeared in person at the August hearings of fact, her attitude was the mixture of disdain and belligerence she had manifested at LB’s inquest.  She did not appear in person at the November impairment hearing. Questions were put to her counsel, Richard Partridge, who answered them as best he could in the absence of his client, which was not terribly satisfactorily, as it turned out.  There was quite a lot of ‘I will have to ask’ and ‘I will find that out for you, Madam’ from Mr. Partridge.  Some documentary evidence of her remediation was produced.  The Panel seemed to consider her moves towards insight and remedy pretty perfunctory:

Remediation

So three months later, Murphy’s counsel presented a bundle of additional evidence by way of mitigation, consisting of

• Emails regarding the ‘yellow card’ (actually an A4 form for recording details of epilepsy);
• An audit of Epilepsy In Psychiatric Inpatient Settings (a ‘baseline’ audit);
• An audit of the epilepsy ‘yellow card’;
• An email regarding epilepsy care;
• An email regarding Directions for Future Research; and
• Testimonials;
• A reflective statement, signed and dated 15 February 2018 (the Thursday before the sanction hearing began);
• A certificate of attendance at ePEX (An Electronic Computerised Record Keeping System) training;
• An ePEX Manual and Index;

The more I re-read the  tweets, the more sickened & disgusted I feel.  Murphy has never apologised to or shown any consideration for Connor’s family, but she has used his death to set herself up in southern Ireland as an expert on epilepsy in learning disability care.

She claims to have had an epiphany after Connor’s inquest & begun her ‘yellow card’ epilepsy recording scheme.  She says she was open with other health workers about her failures, in order to emphasise the importance of epilepsy care and the dreadful consequences of her failure to provide it.  But until the 19th of February, she hadn’t ever publicly acknowledged the full extent of her failings.   Even on Monday, she was giving deflective answers to questions about the extent of her responsibility for Connor’s death and skirting round her previous efforts to displace blame onto the nursing team.  How can she possibly have been honest with colleagues about her errors at a conference in June 2017, when in August 2017 she was stoutly refusing to be accountable for them?  From here, the ‘yellow card’ scheme and the conference look like something cobbled together as extenuation, just in time for the first MPTS hearing.

Murphy’s submitted email featured three other clinicians, showing, she claimed, that she was ‘driving the (epilepsy) scheme forward’.  I’m not sure you can call this bunch a steering group for the scheme, as the participants mentioned have never met as a group and there didn’t appear to be any formal agreement on working to ensure that the scheme is uniformly implemented.  In fact, it turned out that of 3 other people mentioned in the emails, she’s not seen one since 2014, and another since around 2015.  However, she said, she sees the third person frequently.  How frequently? asked the GMC barrister.  Oh, all the time, said Murphy.  He’s her husband.

Moving on to the ‘yellow card audit’ data provided, this came from Ireland’s Midwest health region.  The Midwest region, for those whose Irish geography is a little sketchy, is Limerick and its hinterland.  As it happens, the University of Limerick is where Murphy’s husband is based, as an Adjunct Senior Clinical Lecturer in psychiatry with an interest in research.  In fact, he is the one who appears to be running the whole Midwest ‘yellow card’ project.  Murphy did not make an upfront, public, competing interests disclosure about his involvement in the audit process.
The abstract of the poster presenting the Midwest audit says that the introduction of the ‘yellow card’, coupled with ‘an intervention to improve awareness of risks’, significantly improved documentation of considerations concerning assessment and risk assessment, but did not significantly improve documentation of PRN (as-required) epilepsy medication.

In Cork, no auditing was done because Murphy has been off work since August 2017.  She did, however, claim that “I’ve had verbal feedback that shows 100% use and completion of yellow card for a patient in the unit there, the feedback I get is that it’s working.”
I don’t see how such claims can be considered evidentially admissible in the absence of robust numerical data, especially if – as I suspect – this was oral, i.e. unwritten verbal feedback.  Murphy’s word for it was, at best, hearsay.  There was no way of verifying the accuracy of either her understanding of what was said or her transmission of that understanding.  She produced nothing to corroborate her story.

Having been castigated for failings over recording notes on STATT’s RiO electronic system, Murphy has taken a course on e-notation. She still doesn’t use electronic notes, but if she did, she would hand-write notes & then transfer them onto computer.  I can see more than a smidge of potential in that for transcription errors and omissions.

Murphy ducked directly answering questions about her failures in leadership , leading to dialogues like this:
GMC barrister: You just explained a moment ago this document was your reflection following (LB’s) inquest, is that right?
Murphy: Yes
GMC barrister: You outline leadership as one of the aspects.
Murphy: Yes.
GMC barrister: Do you accept you were trying to blame the nursing (staff) for deficiencies?
Murphy: This is a reflective document about my thoughts and feelings of why I struggled with leadership, this is very personal, part of reflecting on things was thinking what was stopping me, why, this was more a reflection of my difficulties with the environment.

Ah, that inconvenient, uncongenial environment.  Of course.

Chloë Fairley, for the GMC, pressed on:
Fairley: Do you accept that you don’t at any stage identify your own failings in this document?
Murphy: Yes.
Fairley: Do you accept you’re attempting to lay some of the blame on the nursing (staff)?
Murphy: No, someone has to take charge.  Sorry, I’ve got a bad headache.  It was the inquest that was helpful for me, for it to sink in that (the care system) was siloed and there was no-one tying it together, and it should have been me that was doing that.

Murphy claimed to have questioned Southern Health’s interdict on contacting Connor’s family.  I don’t doubt that Sloven imposed just such a prohibition on direct contact.  Yet  doctors have a duty of candour, so Murphy’s abiding by that embargo was dubious, to put it mildly.  Moreover, even after leaving Southern’s employment in 2014, she made no attempt to contact or comfort LB’s family.  Instead, Murphy continued to treat his mother in particular in a hostile and aggressive manner, via her legal representatives at both inquest and tribunal

She contradicted her own evidence: having previously claimed she was distracted by a multiplicity of clinical roles, she then admitted she was no longer doing them when Connor died.  She also made statements that contradicted the submissions made on her behalf by her counsel: she claimed to be a ‘young consultant‘  while her counsel talked of ‘a single clinical incident in a long career.’
Nobody acknowledged that the failings in this ‘single clinical incident’ had stretched out over a span of .

Finally, her counsel submitted for Murphy that she was ‘emotionally broken by these events’.  Given that plural, ‘events’, I don’t think it was Connor’s death that broke her.  I believe it is being held (repeatedly) to account, that she has found shattering.  Had Connor’s death affected her, she could not, would not, have countenanced her barristers hounding his mother as they did.  If she had come to realisation after the inquest, as she claimed, she would not have permitted the same specious attacks on Dr. Ryan to continue at the tribunal.  As with the Tribunal’s finding on impairment (page 15, paragraph 69) when it considered the extent of Murphy’s remorse,  the brokenness of Valerie Murphy seems ‘limited to the consequences these (Tribunal) proceedings have had upon her.’

Despite the dubiety of some of her evidence, despite being granted an extra seven months in which to work up a show of remorse that was still unconvincing, despite the bad faith she displayed in the way she allowed her lawyer to batter LB’s mother, despite the inapt-to-the-point-of-grotesque intervention of her witness Prof Ted, despite her inability to use health information technology, despite one-minute-to-midnight reflections extruded four years and eleven months after Connor went into STATT – her sanction is a 12-month suspension, (which may be extended at a further review before it expires).  The tribunal accepted Murphy’s assertion of a ‘sea-change’ in her attitude.  It even quoted her own marine-metaphor description of herself, verbatim.

I can’t give this change much credence and I really don’t know how anyone can ever place confidence in her again. Her character seems entirely unsuited to responsibility for or authority over disabled persons.  Its salient features appear to be cowardice and dishonesty.  Her behaviour towards Connor’s mother during his time in the unit reeks of both.  Murphy would neither confront Dr. Ryan with her own view of events, where her view and Dr. Ryan’s were in disagreement, nor would she keep Dr. Ryan apprised of what was actually happening to Connor.  After Connor died, Murphy didn’t act on her duty of candour and she made repeated proxy attacks on Dr. Ryan via her lawyers.

One of the reasons I don’t believe that Murphy has overcome either her cowardice or her dishonesty is embodied in this thread of live-tweets from the sanctions hearing.  Dr. Murphy explained she was honest with people about her learning before describing the ‘yellow card’ scheme.

Cork 100

What would ‘honesty about learning’ look like?  Well for a start, it would have to acknowledge the trigger for the learning: the death of Connor Sparrowhawk and Murphy’s responsibility for that death.  True honesty would have to be along the lines of the penitential act:

I confess…to you, my brothers and sisters
that I have greatly sinned
in my thoughts and in my words
in what I have done
and in what I have failed to do
through my fault
through my fault
through my most grievous fault…

So we come again to the ‘insight’ and accountability question: Did Valerie Murphy admit to the professional colleagues to whom she presented the ‘yellow card’ scheme, that, through her ignorance, arrogance and failure to fulfil her duties, an eighteen-year-old-boy for whom she had clinical responsibility came by his death under her care, drowned in a hospital bath?   I beg leave to doubt it.

The original article proposing the scheme, a letter to the editor of the Irish Journal of Psychological Medicinedated January 2017, doesn’t mention Murphy’s experiences at all.  Connor is expunged from the narrative.  What we have here is a detached, academic suggestion from our cogitative clinician, worrying about what appear to be non-specific risks of ‘higher mortality rates, particularly in those with recent seizures‘ and ‘psychiatric medication (that) may interact with anti-epilepsy medication‘ or ‘seizures could be mistaken for evidence of psychiatric illness‘ and – a real kicker here – the fact that ‘from a risk-related viewpoint, those with comorbid epilepsy have specic risks to consider including but not limited to areas such as bathing…
Every individual statement is neatly referenced, either to an academic paper, or to some other authoritative publication.  Far from presenting the ‘yellow card’ scheme as an act of atonement, Murphy is presenting herself as a paragon of farsighted benevolence who has sagaciously synthesised all this disparate observation into a coherent and philanthropic whole, to improve the welfare of the afflicted.  In the case of the risk consideration, Murphy has the gobsmacking neck to refer to the UK National Institute of Clinical Excellence epilepsy management guidance.  You know, that commonsense stuff about deep water and seizures that she fatally ignored when Connor entered her orbit.

Of course, Murphy would have needed to seek permission from his mother to talk about Connor.  She would have had to approach her humbly and frankly: “I realise I did a terrible thing – a series of terrible things – when your son was in my care and after he died.  I was neglectful towards him and I’ve been vile to you.  I am sorry, although I know mere words are not enough.  Nothing I can do will bring him back.  I wish beyond anything that I had done things differently.  I have had this idea for trying to help other doctors do things differently, I hope it might prevent failures like mine in future and avoid deaths.  May I send my ideas to you?  I won’t do anything without your agreement or approval….”

But it’s beyond Murphy.  She doesn’t have the guts, or the integrity, to go beyond mere remorse to contrite action.  She’s happy to wallow in regret, to which she now appears to have added a splash of guilt (I don’t believe the tribunal’s interpretation of her demeanour to mean that she is ‘wracked with guilt’, is correct.  Wracked with regret – for herself – sure; guilt-wracked: No.)   She has made no amends to Connor’s family.  She hasn’t even apologised to them for inflicting some of the deepest hurts one human being can cause another; she’s half-apologised – after prompting – to the Tribunal.

There comes a time when apologies and amends are no longer acceptable. They are too late to be credible.  I don’t know if Murphy has reached Connor’s family’s Too Late, although given that Murphy’s barrister harried Connor’s mother into breakdown and illness at the MPTS fact-finding hearing, I wouldn’t be surprised if their Too Late were last August.

On the other hand, I don’t foresee Murphy ever making true effort at apology.  As I say, she has, in my estimation, neither the backbone nor the probity for it.  She’s interested in (self)-justification.  Not justice.

The Chair of Anthropolyatrics.

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During the morning of the second Tuesday of Richard Handley’s inquest, Wendy Read, one of the United Response staff workers at Bond Meadows when Richard died, was giving further evidence.  The issue of the interplay between Richard’s deterioration in mood, and the worsening of his constipation, came up again.

“There’s been a lot of talk about Richard’s deteriorating mental health.” said the Coroner.  “Could you outline what that looked like, please?”
“Becoming withdrawn,” said Ms. Read, “Staying in his bedroom, not coming downstairs for breakfast, sometimes lunches; not dressing properly; not taking care of his personal care; not going to the day-centre.”

“You’ve told us there was consensus this was deterioration in his mental state,” said the Coroner.  “Was there any discussion that you can remember about whether any of those things might have been related to Richard’s physical health?”
“No,” said Ms. Read.

“Is it possible,” asked the Coroner, “That this could have been because he may have been physically feeling uncomfortable?
“Possibly now,” said Ms Read, implying that no-one thought of it at the time, “Yes.”
“So that is a possibility,” said the Coroner.
“Yes, possibly,” agreed Ms. Read.

The Coroner followed up.  “At any point in those last few months, do you remember anybody saying it could have been a physical problem?”
“I don’t remember,” said Ms Read.
“You have no memory of anyone discussing a physical problem?”
Ms. Read confirmed she had no such recollections.

Sara Ryan went twitterballistic.  Almost unbelievable. People like Richard (and LB) only have mental health issues. Physically, they are perceived invincible.

Not ‘invincible’, I thought.   ‘Insensible’.  Too different from the rest of us, too lacking in cerebral function to notice bodily discomforts, still less be disturbed by them and manifest that disturbance behaviourally.  Not for the learning-disabled, a belly-ache-induced grump, or an incubating-cold lethargy, or post-seizure sleepiness.  Poor mood is a sign solely of mental illness.  So the learning-disabled don’t need treatment for physical ailments that don’t show florid physical symptoms, but neither can their limited minds benefit from mental health treatments based on ‘higher’ brain functions, such as talking therapies.  The only possible treatments will be drugs and other restraints to control or damp down the disordered manifestations of their physical (oh, the irony!) neurology.

Mark Neary, who has watched his son Steven suffer the agonies of nonalcoholic steatohepatitis as a result of this approach, pointed out: It’s set up that way at transition.  Throughout childhood Steven was under a paediatrician.  At 18 he suddenly came under a psychiatrist.  No reason except for age change.

At the moment, G has six-monthly visits with the paediatrician, who makes sure the wheels haven’t come off in G’s various areas of specialist secondary and tertiary care, checks everything’s all right with therapies and education, has a think about anything new that may have come up, and writes a long, detailed letter to the GP, copy to me, so everybody knows where they’re up to.  G has never needed CAMHS or psychiatric involvement and, absent some hideous catastrophe, I am confident never will.  But at 18, oversight of G’s care will pass to the GP; or, if there’s a Learning Disability consultant involved, that person will be a psychiatrist.

Recently, G got yet another new diagnosis.  Looking back over old texts and emails to G’s Papa, detailing days-off-school and the outcomes of GP and paed visits, I reckon this one’s been creeping up on us for about four years.  The GP did some desultory investigations, but once infection was ruled out, the matter dropped.  Not so with the paed.  Every visit, it was, “And how’s the <relevant bit> been since last time?  Not so good, eh?  I wonder if…”  Further tests were less than conclusive, but the paed still wasn’t satisfied, and referred G to New Specialist. New Specialist took a good hard look, came up with a diagnosis, prescribed a suitable treatment and management régime, and G has been a great deal better since.  It’s hard to imagine that a psychiatrist would have been so doggedly persistent about a physical matter, and the GP was already stumped.  I’ve since found out that this new (and lifelong) condition is commonly not diagnosed until people are nearing middle-age and have been suffering for decades.  Large bouquet and grateful thanks for the paediatrician.  And a lot of worry for the future.  Even post-18, G really needs the holistic involvement of the paediatrician.  And it won’t be available.

Well, yes, wrote John Lish, The clue is in the name. If they were ‘anthropatrician’ then it would be a lifelong relationship.

Point is, I replied, a paediatrician is a secondary-care generalist. A psychiatrist very much isn’t. Why are LD people put under mental-health secondary-care instead of general adult secondary-care?

John responded, Other than the GP, there isn’t really an equivalent generalist role. A psychiatrist is probably seen as ‘best fit’ but underestimates the continuing barriers to physical health.  Creating an community based adult generalist might be the way forward.

I’d already mentioned my worries about loss of the paed rôle in a few years, to one of G’s (many) secondary-care consultants.
She sympathised.  “We have so many more complex young people surviving into adulthood these days,”  she said.  “Sometimes their care is more than it’s fair to ask GPs to take on.  We really need a specialism for adults with complex or multiple health conditions, but there aren’t any except in elderly care.  In the past, I have referred some of my complex 18-year-olds straight to geriatrics.”
I boggled.  “Er, doesn’t seem awfully appropriate to be referring 18-year-olds to a service designed for 80-year-olds.  Would they not feel terribly out of place?”
“Oh, no, no, ‘gerries’ are lovely,” she said, warm enthusiasm in her voice.  “They’re the last generalists standing.”  Hmmn, I thought.

(Like anthropatrician, btw, I wrote to John. Could be excellent recruiting incentive?). By which I meant that I could imagine some doctors might like the idea of being called ‘patrician’. G doesn’t have psychiatric or mental health difficulties. Lots of physical problems requiring specialist continuing care, and a spiky learning ability profile, but nothing for a psych to do. Why even go there? Roll on anthropatrics!

John wasn’t letting the grass grow.  Okay, so how do we get anthropatrics established? Transforming Care has to progress to preventative and better quality support/outcomes for LD people.

We batted a few ideas around.  Looking at how geriatrics became established as a discipline and thinking how to replicate the drivers behind its development after the Second World War.  Thinking whom to rope in on the NHS side.  John went off to put his strategic-policy thinking cap on, and I began to get an attack of the wordnerderies.

‘Patrician’ somehow sounded off.  I knew it derived from the Latin word ‘patricius’ (of noble rank).  While doctors might be flattered to be named part of the nobility, I didn’t see how that fitted with the other ‘ician’ names.

I looked up ‘paediatrician’ .  Derived, not from Latin, but from two Greek words, ‘pais’ (child) and ‘iatros’ (doctor).  So the word would have to be ‘anthropiatrician’, from ‘anthropos’ (human).  But ‘human doctor’ doesn’t say much.  That could apply to any medical practitioner, except, I suppose, those in veterinary medicine.  (Not but what input from physicians who are used to reading non-verbal clues to their patients’ conditions and/or pain might be useful).

So, the word for the proposed specialism needs to say “a humans’ doctor who specialises in complex, multiple conditions” … an anthropolyatrician?  I think anthropollies might sit very nicely between the paeds and the gerries, don’t you?

Get a meeting with Ray James, the LD lead for NHS England?  suggested John.  Might as well aim high.

Indeed. So, by ten years from now, how about:

The Connor Sparrowhawk Chair of Anthropolyatrics at Oxford, and
The Richard Handley Chair of Anthropolyatrics at Cambridge?

*****

*****

PS – Friday 02 February 2018

Linnet Mac sent me the link to this touching and beautiful account of her experience of searching for the right ‘adult paediatrician’ for her daughter, who turned out to be a palliative care specialist.
To Fin, to Iona’s current consultant and to all the clinicians who put in many extra hours to go the extra miles – thank you.

 

Shitstorm.

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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 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 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 the health documents.  Richard himself could not read these, or 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 .
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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