The Irresponsible Clinician.

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Revolting reminder yesterday of the complete lack of empathy and human kindness manifested by LB’s so-called Responsible Clinician, via her brief, at his inquest.

The psychiatrist, Valerie Murphy, is up in front of the GMC’s fitness-to-practice Panel this week and next.  Confusingly, the GMC has decided to refer to LB neither by his name, Connor Sparrowhawk, nor his nickname of LB, but as ‘Patient A’.  There’s probably a whole other blogpost in there about the effect and intentions of this depersonalisation, but right now I am busy with other things.

GMC Murphy notification

The full list of allegations runs to four pages (thanks and acknowledgement to George Julian for posting these).

GMC Murphy 2

GMC Murphy 3

GMC Murphy 4

On a first count, there are 55 separate allegations there, of which only the first does not allege misconduct.  But the effect of 7 (i) and 7(ii a-c) is to multiply the accusations in 7(a)-7(f).  Item 7 contains 24 separate allegations of misconduct, giving a grand total of 68 allegations of individual instances of Murphy’s care of LB falling below adequate standards.

Of those 68 allegations, Murphy has admitted 30, which are accordingly found proven, but contests the remaining 38.  Looking at the matters admitted to, they are either procedural failings (not arranging a best interests meeting, inadequate record-keeping) or related to Connor’s epilepsy.  The ones she is contesting are the mostly psychiatry-related ones: assessment, diagnosis, treatment and medication, including the whole of that multiplex Section 7.

The inference I draw from this is that she intends to assert that her treatment of Connor as a psychiatric patient was unexceptionable, that its poor documentation was down to faults in the system beyond her reasonable control, and that his physical health was not her responsibility.

At Connor’s inquest, she was already citing system chaos, for example on the morning of Day 6:

VM: I can’t remember what was seen or discussed at that meeting, but I remember it as quite chaotic..

11.05  AS asks who those minutes wld be sent to?  VM: Wouldn’t know.  AS: Do minutes of CTM meetings find themselves in patient’s medical records?  VM: Yes, they would.  AS: Would members of the team have a duty to ensure those records were accurate as medical professionals?  VM: It depends, we were struggling w RiO, the Chair would read and confirm them.  

(From @LBInquest tweets)

Now, I’m all for Southern Health management being made to shoulder their share of responsibility.  It was painfully obvious at Connor’s inquest, that the detached and indifferent nature of Southern Health’s oversight of Oxford services was itself probably well over the line of neglectful, leaving staff demoralised and demotivated.  But Southern’s flaws, however egregious, do not excuse a clinician failing in her direct duty to a patient.

The failure properly to treat Connor’s epilepsy is catastrophic on its own.  Psychiatrists are medical doctors, and all medical doctors are required first to train as generalists before they specialise.  Moreover, Murphy is a specialist in the psychiatry of learning-disabled people.  Given that epilepsy is commoner among learning-disabled people than it is in the general population, she should have been well aware of epilepsy in general. And, given the information that came into STATT with Connor and the subsequent additions to that information offered by his family, she should have focussed on epilepsy as a difficulty of Connor’s in particular.  Instead, she dismissed it, and continued to do so.

On Day 5 of LB’s inquest in 2015, she insisted that “there was no evidence of seizure activity during LB’s admission”, because “two instances that were explored as potential seizures….were ruled out”.  This was in spite of clear and urgent warnings, both oral and written from LB’s mother that she had seen signs of seizure activity – drowsiness and a bitten tongue – while LB was in STATT.  Now, it seems, Dr. Murphy has folded on the epilepsy in the face of the inquest findings, although, oddly, she still appears to contend that she obtained a history of Connor’s epilepsy that included whether seizures made him tired and need to sleep.

My general feeling for the other contested allegations is that these are areas where it is possible for Murphy to argue that she did the things she should have done; it is merely her recording of them that is defective.  Slap-on-the-wrist stuff, not striking-off material.  Whether those arguments will seem plausible, is likely to be largely down to the credibility of Murphy herself.  She needs to present herself as competent, knowledgeable  and benevolent, but overworked and harassed.

Hence, no doubt, the utterly disgusting hounding of Connor’s mother in front of the Tribunal yesterday.  The interactions of Richard Partridge, Murphy’s barrister, with Dr. Ryan, were not so much a cross-examination as an attempted crucifixion.  He did everything he could to portray Dr. Ryan as incompetent, ignorant, uncaring, shiftless and vindictive.  It was exactly the same strategy as the one used at Connor’s inquest by Murphy’s then-counsel, Alan Jenkins.  It failed then and it failed this time, for the same reasons as before.  Firstly, Dr. Ryan is a person whom it is difficult to impugn: she has always been shrewd, informed, capable, industrious and warm; and now she is showing tremendous courage in the face of loss and grief that would overwhelm most people.  I don’t think a Panel with even a modicum of intelligence is going to fail to notice the discrepancy.  The inquest jury certainly were not fooled.  Secondly, and far more importantly,  Dr. Ryan’s personal characteristics are completely irrelevant to the question of the adequacy of Murphy’s care of Connor.  Whether Murphy found Dr. Ryan’s outspokenness uncongenial, difficult or even frankly insufferable, that was still no excuse to ignore the information she contributed about Murphy’s patient, Connor.

That both Murphy’s briefs have taken this line of personal attacks upon the patient’s mother, suggests to me that the initial steer in that direction comes from Murphy herself.  It seems like a risky strategy.  It’s going to be hard for her to come across as competent when she has so seriously misjudged Dr. Ryan as well as Connor himself; or as benevolent when she has allowed her barristers to stick so many unwarranted knives of sneer and innuendo into a grieving mother, and then twist them.

The nadir yesterday came when Partridge read out Dr. Ryan”s impression of Murphy as ‘dismissive, arrogant and distant’ and told her it was ‘very upsetting for Dr. Murphy to hear any patients relative describe her as such’.  Dr. Ryan asked for a recess at that point:

‘Dr Murphy is upset by your evidence.’ Dr Murphy is upset. Upset. ‘Can I have a break?’ I was taken to a room alone. To howl…

Nevertheless, she returned to display the intellectual rigour that #JusticeforLB’ers have come to know and admire.   Pursuing an irrelevant line of questioning on the blog, Partridge tried leading his witness: ‘The tenor of the blog was critical, in a neutral term’.

“I don’t think ‘critical’ is a neutral term,” rejoined Dr. Ryan.  “The blog was an honest account of our experience.”

Partridge continued in a similar dismissive vein, referring to ‘the tongue-biting incident’.  When told by Dr. Ryan that it was not an ‘incident’ but a seizure, he went DefCon1 on the patronisation:  ‘I know that you feel it was a seizure.’

Dr. Ryan did not let him get away with that, either. “It was a seizure.”

I really don’t know what Murphy hopes to gain by permitting or requiring her counsel to act thus.  If anything could confirm the accuracy of Dr. Ryan’s negative summation of Murphy’s character, it surely has to be such a display of tone-deaf, compassionless persecution.  To  ‘dismissive, arrogant and distant’, most observers would probably add, ‘egocentric, devoid of empathy, cruel and disrespectful’; in short, thoroughly unsuited to being a consultant psychiatrist.

An irresponsible clinician.

Brief and Briefer : Justice4LB@GMC.

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The General Medical Council’s Fitness to Practise hearing into the conduct of Dr. Valerie Murphy (LB’s consultant psychiatrist – and Responsible Clinician – at the STATT unit where he died) began at 9.30 this morning. It’s taken over four years to get to this point; shortly after LB’s drowning in the STATT bathtub, Dr. Murphy upped sticks and headed back to her native Ireland, where she has continued to practise. 

I’m pretty uninformed about GMC procedures, but it appears that the Fitness to Practise Tribunal acts in a quasi-judicial manner.  Three people – one legally qualified, one medically qualified and one a lay representative – act as the judge-and-jury panel, while the GMC acts as prosecutor and the doctor as defendant. Parties complaining of being injured by the doctor’s actions are kind of off to the side as witnesses.

Both the GMC and the doctor get to instruct counsel.  Witnesses don’t; it is the GMC’s legal team who have to look after patients/complainants.  Fortunately, the GMC’s solicitor seems to have been entirely as considerate as one could wish of LB’s family, and one hopes that the GMC barrister will be equally considerate of LB’s mother, Dr. Sara Ryan, when she comes to give evidence.  One also hopes she will block the kind of disgraceful personal attacks on Dr. Ryan that Dr. Murphy’s inquest counsel indulged in, should anybody attempt to follow his example.

At today’s hearing, the Tribunal chair did introductions and housekeeping.  The GMC barrister made an opening statement outlining the case against Dr. Murphy: the events in STATT; the first Verita report; the inquest findings; and findings from the investigations of the GMC’s expert witness.

Dr. Murphy’s barrister corrected a couple of minor errors regarding designations and dates, and suggested that the Verita report was possibly irrelevant and unspecific.

The legal bundles of paperwork – two lever arch files apiece – were distributed to the Tribunal panel members, and they retired to read through them.  Evidence from witnesses will be not be heard until tomorrow.

And that was it. The public part of the hearing for today was all done and dusted in about an hour.  The briefs were brief indeed.  I hope the GMC solicitor had told Dr. Ryan that was likely to happen.

Imagine re-reading and re-re-reading all the evidence – the reams and reams of excruciatingly painful evidence – about your son’s death.  Imagine it having this effect on you.  Imagine psyching yourself up to do what was necessary, once more, to hold accountable the person who, above all others, could have put in place the precautions that would have avoided that death.  Imagine turning up at the Tribunal and seeing that person face-to-face again.  Imagine if you expected, that you if you could hold it together until 5pm, your part would be all over. And then imagine being told, without warning: Not today; come back tomorrow.

I hope it didn’t happen that way.  I do hope that warning wasn’t omitted.

Love and Affection and Dirty Words.

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Read a couple of good blogs this week on love and social care.  In case you missed them, here are Damn – Forgot My Mantra from Mark Neary and The Saturday Boy from Rob Mitchell.  In both, ‘love’ and ‘friendship’ seem to be social-care dirty words.  Actually caring about somebody, rather than just doing care-tasks for them, is frowned on: inappropriate personal involvement.  I remember the former student at the 2014 LDS conference talking about how a gentleman for whom she undertook a direct-service rôle had referred to her as ‘a friend’ and she had corrected him.  She couldn’t, she told him, be a friend while she was paid to spend time with him.

I don’t think the attitude would be much of a surprise to the general public.  Second Youngest Uncle and his other half don’t have children (unless you count the half-dozen-plus canine ‘fur babies’ who have landed in their lives from time to time – rescue dogs all) but 2YU has had the idea of fostering and/or adoption in his head for the best part of twenty years.  And now that he and R are settled in their dream house – a six-bedroom former vicarage near the sea – they are in a position to offer the sort of home they would like to.  So the week before last, they went to an open evening at a fostering agency, to see what it entailed and whether they might be considered.

The lady running the evening gave a bit of a talk on how the process worked, and asked the participants – about 30 people, mainly couples – what they thought foster-children would need from them.  Structure, said someone.  Routine, said someone else.  Predictability.  A sense of safety, said a third. A healthy diet of foods they liked, suggested a fourth.  And activities.  The suggestions kept rolling in; but Second Youngest Uncle, he told me, was getting twitchier and twitchier.  All this talk of foster-parenting and foster-families and nobody was mentioning the most important thing of all.  Was it a dirty word?  Were people afraid that if they said ‘love’, it would be misconstrued?  If he said it, would he be given the bum’s rush out the door for inappropriateness?  But then he realised that if love wasn’t permitted as part of the deal, he wouldn’t want in anyway.  Eventually, he put his hand up and when the agency lady turned to him, he said, rather self-consciously and tentatively, “Affection?”

The agency lady flung her hands wide and practically shouted, “Yes!  Thank-you!  LOVE!  Children need LOVE!  They need hugs and pats-on-the-back and to sit on someone’s lap for a cuddle when they’re upset!  Now, you may be worried about what’s acceptable and what’s not, and certainly there are boundaries that you must observe, but we will teach you appropriate ways to demonstrate affection.  You will not need to keep your kids at arm’s length, quite the reverse!”

Later on, an experienced foster carer gave a warts-and-wonder account of his time as a foster-dad: the stomach-sinking feeling when things didn’t go well, and the huge joys when they did.  He spoke of his distress when one long-term foster-child was returned, despite his forcefully-expressed misgivings, to a precarious home situation; only to re-enter care fairly soon thereafter, for the same reasons as before, but carrying an even bigger burden of trauma.  If you are prepared to open your heart to children in need, you must, he warned, be prepared to have it broken at times.  On the other hand, several of his former foster-children have kept in touch after leaving care, and come back for big occasions and the odd Christmas, bringing girl- or boy-friends, then partners and even babies.  He never imagined he would end up with foster-grandchildren, and they are the most delightful bonus.

The day after Second Youngest Uncle had spent an hour debriefing over the phone to me about the evening, Grenouille’s Children’s Social Worker came to visit.  When we started in on the EHCP process, far too long ago, one of G’s expressed wishes was to be able to go out and about, maybe at the weekends, without having to drag Dad or Mum along everywhere. And, said G, I would like my helper to be a young person, like E (one of the medical respite carers, an early-twenty-something) not somebody middle-aged like my TAs.  So G now has a PA, very energetic and up for all G’s notions… but at least twice the age G was thinking of.

A second person needs to be recruited to cover all the assessed hours, so this time, said G, could it PLEASE be a young person?  T is great, but I want to feel like I’m going out with a friend, not a parent!

I did wonder if the f-word would give the CSW the collywobbles, but it did not appear to.  “Of course!”  said the CSW.  “Somebody your age doesn’t want to be going out with – well, not an old fuddy-duddy, it wouldn’t be fair to say that, but someone who is fuddy-duddy age!  I’ll speak to the recruiter and see if we can get a younger person for you.”

G smiled broadly and after a bit more chit-chat, the social worker asked to have a look at G’s bedroom.  I sensed my frown-muscles twitching, in much the same way, no doubt, as Second Youngest Uncle’s had been.

“Why do you need to see G’s bedroom?  The support workers won’t be working in there – they are for going-out, not staying-in.”

“Oh,” said the CSW, “It’s just a box-ticking thing – I have to see the child’s bedroom – not every time, I know G has a lovely room, but I have to check it at intervals.  Actually, G, I should say, can I see where you sleep,” – she turned to me, “…I once got a child to show me their room, but when I asked where they slept, it turned out to be in an old airing-cupboard.”

I felt my eyebrows rebound up towards my hairline.  “Would you like to inspect our airing-cupboard as well?  I guess it would be big enough for a bed, if it weren’t already full of hot-water-tank and linen-shelves!”

“Oh, no,” the CSW assured me.  “Just the bedroom.”

“Well, actually,” I said, abandoning sarcasm as a lost cause, “I think this bedroom-inspection thing is a bit of a cheek.  G is a child in need by reason of disability, not because there are child-protection concerns.  Given that, I don’t see why you need to go into the private areas of our house.”

“It’s literally so I can tick a box.  Seen the child?  Tick.  Spoken to the child?  Tick.  Seen where the child sleeps?  Tick.”

“I still don’t see why you need to go up there.  The medical respite carers are in there once a fortnight when they do an evening stint and put G to bed.  They have safeguarding responsibilities like any other professionals; do you not think that they would report it if there were anything amiss with G’s sleeping arrangements?”

“I don’t mind,” interjected G.  “It’s my room and I don’t mind.”

“Okay,” I said, reluctantly.  “It is your room, as you say.”

Inspection made, the CSW departed, but I still felt niggled.  “Not that you could have done anything about it,” said an acquaintance, when I voiced my irritation.  “If you’d refused, it would have been, obstructive mother, what’s she hiding?  Red flag on the file!”

Yes, I thought, that is what has got me so narked.  It’s the coercion behind the intrusion.  It may be G’s room, but it’s MY bloody house, and if I don’t want a damned social worker walking up MY stairs and along MY landing to inspect G’s room for no better reason than to tick a box, why can’t I sodding-well refuse permission without eliciting suspicion?  It may seem a relatively trivial reason to invoke them; but where, exactly, are my bloody Article 8 rights?

In our house, the dirty words are not ‘love’, ‘affection’ and ‘friendship’.

They’re ‘box’ and ‘tick’.

Okey-Dokey Hokey Cokey.

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It’s the beginning of the holidays, so of course we had appointments for G today.  The one Grenouille needed the most urgently was for a haircut, but I wasn’t sure we’d have time.  The first scheduled stop was at the orthotics clinic, which is usually a long and tedious wait followed by a longish appointment.  Today, however, we were in and out in twenty minutes, with only one minor mishap when G’s over-long fringe impeded vision enough to cause a near-miss with a piece of physio equipment.

“We really ought to get me a trim, Mum.”

The second was at the medical centre in town; again, we were done and dusted in twenty minutes.

“That was quick, Mum, wasn’t it? In, out, in out.”

“Yup. What do you fancy shaking all about?”

“My head. My hair’s getting in my eyes again.”

Contrarious (a one-act play).

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Act I

Scene 1

A teenager’s bedroom, 7.15 a.m., a Wednesday morning. As the curtain rises, the audience discovers G standing by the bed, wearing school uniform shirt and trousers, sockless and apparently headless, in the act of struggling into a school jumper.

Kitchen noises can be heard off.

Kara (off):  G! What do you want on your toast, honey or chocolate spread?

(G’s head pops out of neck of jumper).

(eagerly):  Is there any honey left?  I thought it got finished yesterday.

Kara (off):  There’s plenty, I opened a new pot.

G:  I’ll have chocolate spread.

(Kara can be heard offstage, bursting into laughter).

FIN

Unsweet Sixteen.

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Today’s SevenDaysOfAction post, “16 Years”, asks us to put ourselves in the shoes of Tony Hickmott, who has spent 16 years, from age 24 to 40, in an ATU, and think about what we ourselves accomplished in those 16 years.

Between my 24th and 40th birthdays, I:

  • Finished my postgraduate degree
  • Worked for five different employers, then began working from home
  • Sang in a dozen different opera productions
  • Bought a flat, sold it, bought a house, sold it, moved to another one
  • Travelled in Europe, Asia and South America
  • Attended the weddings of many friends and the christenings of their babies
  • Attended one family funeral and one friend’s funeral
  • Got married and had two children
  • Began a further postgraduate qualification
  • Made many friends and hosted them as guests in my own home
  • Spent at least one weekend a month walking in the wild places of Britain
  • Went to plays, concerts, the cinema, firework displays, fairs, ceilidhs, restaurants, dinners and parties
  • Went to bed in the wee small hours rather oftener than I probably should have

And

  • Left not one permanent footprint on the sands of time, without regretting a single minute of it.

Tony Hickmott hasn’t left a mark on history either.  In his case, it’s been because he’s been locked up, for no crime, without hope of appeal or reprieve, in near-solitary confinement, as a publicly-funded patient of a privately-run Assessment and Treatment Unit.

Sixteen bitter years.

Common Trials: The Coordination Conundrum.

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

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

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

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

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

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

Four Hours With Franklin.

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

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

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

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

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

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

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

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

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

Chains of Love.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

LB: Another Day…In Court.

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

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

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

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

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

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

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

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

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

*****

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

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

No learning. No honesty. No Trust.

See you in Court, Sloven.