The Irresponsible Clinician.

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#justiceforLB, Connor Sparrowhawk, GMC, High Ordeals, JusticeforLB_GMC, learning disability, medication, mothers, NHS, preventable deaths, Sloven Health, true stories

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.

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

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.

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Brief and Briefer : Justice4LB@GMC.

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#justiceforLB, Connor Sparrowhawk, GMC, JusticeforLB_GMC, preventable deaths, true stories

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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assessment, care in the community, fostering, human rights, mothers, social work, true stories

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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true stories

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).

Tags

mothers, true stories, voices of disability

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).

G (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.

Tags

#7DaysofAction, #justiceforallthedudes, (un)accountability, adult LD services, institutions, learning disability, The ATU Scandal, true stories

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.

Silly.

Tags

appropriate vocabulary, Special Needs Education, true stories

Been reading H.E. Marshall’s Our Island Story with G, in an attempt to supply some sort of chronological framework for the chunks of historical knowledge that G has acquired in school, but has trouble situating in their wider context.  The book, which originally belonged to one of my grandmothers, is a product of unashamed Empire and is hence more than slightly cringeworthy in places, but it has some cracking good stories in it, and is written in short chapters at a level that G can follow without getting bored.

I want G to be able to think critically about ‘facts’ presented (in almost-post-Brexit Britain, an idea of the jingoistic Edwardian nonsense to which some Brexiteers seem to be harking back, can only be a useful addition to the critical-thought armoury), so we’ve been reading a chapter and then discussing it.  We decided, for instance, that the explanation for Stonehenge (that Merlin magicked the stones into position) was not very believable, and we went and did some looking-up to find out how the place is thought actually to have been built.

Today’s chapter was about King Alfred learning to read as a boy; how books, still handwritten on parchment (cue research into and discussion of differences between paper and parchment), were rare and hugely valuable; how Alfred and his brothers competed to be the first to master reading; and how Alfred loved reading ever afterwards.  The chapter is illustrated by a vaguely Pre-Raphaelitish colour plate of an adult Alfred reading what appears to be a blank broadsheet newspaper.  He has a white sheet crumpled in his hand and more on the table in front of him, while other sheets spill off his lap to lie, unheeded, on the floor.

G contemplated it.

“The story said writing was bound in books.  That’s not a book.”

“You’re right, it’s not.”

“That looks like paper, not parshmin.”

“Top-notch observation, G.”

“And books were ‘spensive, so people took care of them.  He’s not taking care.”

“Again, my lovely, can’t fault your logic.”

G stared at the plate for a bit longer.

“Someone’s done silly drawing.”

*****

*****

Petra: Rolling Rocks Uphill.

Tags

#7DaysofAction, #justiceforallthedudes, (un)accountability, adult LD services, assessment, babies, learning disability, Special Needs Education, true stories, voices of disability

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That no help is forthcoming is chokingly, nauseatingly shameful.

Pharmacy Tales.

Tags

appropriate vocabulary, medication, true stories

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

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

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

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

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

“Er…”

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

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

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

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

The Palace and the Pigsty.

Tags

adult LD services, care in the community, independent living, Local Authorities, true stories

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

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

  

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

1/2 Taking my son to Uni. Reflecting on what it must be like for those whose children rely on social work & social care.

— Rob Mitchell (@RobMitch92) September 10, 2016

2/2 How do you trust the state to care for the most cherished & loved person in your life, when they narrative is continued failure?

— Rob Mitchell (@RobMitch92) September 10, 2016

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

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

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

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

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

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

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

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

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

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

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