Nigel, Oily Rags and Engineers.

Tags

(un)accountability, institutions, SEND Transport, Special Needs Education

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 on behalf of a distraught fellow-parent. 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>

Alarming.

Tags

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

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

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

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

The alarm, appropriately for an emergency warning, was loud: “Like a fire alarm,” according to Angela Stone, one of the day workers.  Inconveniently loud.  “It was going off disturbing everyone.” said Ms. Stone.
So the engineers were called to ‘tweak’ the monitor.
“It 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.

Injustice For LB.

Tags

#107days, #justiceforLB, (un)accountability, Connor Sparrowhawk, High Ordeals, learning disability, preventable deaths, Sloven Health

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:

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 @JusticeforLBGMC 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. This is likely to be true. The frequency of contact does not, however, constitute evidence of assiduous devotion to working on the yellow-card project. Although they do not share a surname, the third person is Murphy’s spouse.

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 #107days.

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.

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 Medicine, dated 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 specific 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.

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.

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.

Picnics, PBs and politics.

Tags

(un)accountability, institutions

Yet more grim news from #JusticeforLB.  Tim Smart, the ‘Interim Chair’ parachuted in by NHSI to sort out Southern Health, is doing a fair old impression of someone bucking for a change of name to Tim (Possibly-)Nice-but-Dim, as he seizes the first opportunity to fail to engage with the public.  Deeply disappointing.

Meanwhile, Mark Neary is struggling (again) with bureaucratic stupidity at all levels of government, in his quest to ensure that Steven can do perfectly ordinary things like go swimming.  He’s also struggling with ‘experts by non-experience‘ who insist, in quite spectacular displays of non-person-centredness and ignorance of non-directiveness and in the face of all the evidence, that he ‘should’ be having a good experience of Personal Budgets (PBs) and Direct Payments.  He isn’t.

It reminds me of an argument I had with my tutor about political philosophies.  We were reading a series of novels that included Le Rouge et Le Noir, La Faute de l’Abbé Mouret and L’Espoir and got into a big stushie about secularism, anticlericalism, and Communism (amongst other things).  The tutor argued that Communism was a secular political philosophy.  I argued that it was an anticlerical religion because it had articles of faith, such as the required belief in the historical inevitability of dictatorship of the proletariat; a millenarian postulate, if ever there was one.  We eventually agreed that any system would work, provided everyone in it was of perfect good-will; but that since people are without exception imperfect, no system could work flawlessly.  We also agreed that in practical terms, neither theocracy nor Soviet Communism were very appealing.

And the same applies to Foundation Trusts and Personal Budgets and other things like Education, Health and Care Plans.  They are not necessarily either good or bad things in and of themselves, but like all theoretical constructs, are, in the real world, just (and only) as good as their implementation.  In turn, implementation is generally as good as the people responsible for it.  It’s no good saying that the service structure is excellent if the services themselves are execrable and delivered or run by the malicious, the hidebound or the simply uninterested.

Whatever system you’re engaging with, you’d better hope, or pray, to whatever entities you think may influence the outcome, that you get good people controlling things.

And meantime, be prepared to shovel shite.

I.Can’t.Even.

Tags

#justiceforLB, (un)accountability, Connor Sparrowhawk, institutions, learning disability, NHS, preventable deaths, Sloven Health

This latest #JusticeforLB development is almost beyond comment.  It does, however, throw into sharp relief the siege mentality obviously operating within Southern Health; and speaks volumes about Sloven culture and the messages purposefully circulated within, and outwith, the organisation.

The transcript below comes from a message left on LB’s mother’s office answerphone from someone claiming to work for Sloven.  It doesn’t much matter whether the caller is a member of management, a lower-ranking staff-member, or just an unconnected crank; she has obviously absorbed and internalised an execrable attitude to LB and to his mother, and feels justified in spewing it out.  A toxic attitude that aligns precisely with Sloven’s dealings with LB and his family, all through the more-than-three-years since LB was admitted to STATT.

And Sloven’s response?  Of a piece with their previous form, and with the call.

Sloven are not setting up an enquiry, actively seeking the culprit and requiring staff to disclose information.  They’re not even setting up an internal enquiry and asking for all available information.  Oh no.  They will, apparently, set up a ‘full internal investigation’, if and when they receive ‘any information’ in response to their ‘urging’.

Pathetic.  As always.

 – – – – –

Good morning, hello. Hi, I believe this is a message for Dr. Sara Ryan, um, I’ve been seeing on the media about your son, your poor son that died under the care of Southern Health.  I work for Southern Health and I’m, it, it’s awful that you’ve lost him, I’m so sorry that you have done, um, ’s tragic, and … I hope you find some closure after the report, the, um, issue of the GMB … CQC report today, but I do think you are being reall- very vindictive.  I think you are a vindictive cow.  On TV all the time, ummm, slating the NHS Southern Health.  With your intelligence background, you know, as much as anybody else knows, that Southern Health only took over those units in Oxfordshire recentl-, you know, the recent months before your son died.  You know, with your background, it takes a while to make changes in anywhere, and I think now you’ve just become a bitch and you want some attention, but you are vindictive, you are unpleasant, and you are a nasty cow.

This message was recorded at 9.33am on Friday April 29th.  To save this message press 1.  <beep> To-  Message saved.

– – – – –

Reparations and Resignations.

Tags

#justiceforallthedudes, #justiceforLB, (un)accountability, institutions, Local Authorities, Sloven Health

After several days of carefully-worded prevarications, the Prime Minister has finally had to admit that in claiming he had nothing to do with offshore tax havens, he was in pants-on-fire territory.

Media coverage appears to agree that not coming clean at the earliest opportunity was a particularly stupid move. “It’s never the offence, it’s always the cover-up“, says one headline.  Cameron doesn’t appear to have helped himself by sounding plummily and defensively irritated when being questioned.

Worse than merely causing offence, or laying himself open to the most caustic ridicule, it also leaves the PM under ongoing suspicion that there may well be more revelations to come.

It’s not that he participated in legally permissible, if morally questionable, financial dealings.  It’s that he didn’t tell the truth when asked.  Even if he didn’t outright lie, he was evasive and shifty.  The public are not daft.  They can spot shiftiness when they see it; while for the media, a squirm is catnip and the scent of a buried bone: all the incentive they need to keep on digging. Cameron’s failure of candour is what has led to calls today for his resignation; for many, he has forfeited the level of public trust considered necessary for him to continue in office.  He could confess every little peccadillo he’s ever committed, and still people would wonder if there were more.

In the same newsfeed as the multiple pictures of the beleaguered PM, came this report, on how the Oregon State University has changed the way it handles sexual assault cases linked to the college or its students.  In 1998, Brenda Tracy was gang-raped by four men including two U of O students on sports scholarships.  Despite the accused men’s admissions, the investigation was mishandled and dropped.  But in late 2014, after sports journalist John Canzano wrote a piece on the incident, the president of the University, Ed Ray, contacted Ms. Tracy to apologise.  Ray had only joined Oregon State in 2003, five years after the assault.  Ms Tracy considered his apology genuine and is now working with the University to improve its approach to the problem of sexual violence by or towards students.  In contrast, Kristin Samuelson and Laura Hanson, who were also badly treated by the University following student-linked rapes, are still without proper apologies or closure.  Both were discouraged from reporting the rapes, and Hanson later discovered that the University had taken possession of her supposedly confidential counselling records without her permission.

Back in the BC days (Before Children), I worked at one time for a Local Authority, and every election day (which was most years, as our councillors retired by thirds rather than in one fell swoop), I would end up in a school or community hall with an electoral register, some rickety plywood booths and some very battered black tin boxes, as Presiding Officer of a polling station.  The duty was mostly mind-numbingly and bum-numbingly tedious, and often foot-numbingly cold as well, but on this particular day, the station was in the community hall of an old people’s home, so it was at least warm.  I arrived at 6.30, set up the booths, the tables and the notices, and nipped through to the loos, which were opposite the day-room.  They were nicely kitted out with modern fittings, and discreet stacks of incontinence supplies in each cubicle.  However, when I next paid a visit around elevenses, there was a large blob of shit in the middle of the floor, with a trail of smaller blobs leading to one of the cubicles.  I went to find the day manager, who thanked me and said it would be dealt with.  At lunchtime, around 2pm, the blobs were still there, each dried to a darker crustiness on top.  I spoke to the manager again.  “It’ll be dealt with!”, she said, sharply.  But by 5pm, the shit was still there – only someone had trodden in it, and a trail of stinking footprints and zimmer-frame skid-marks led back across the corridor carpet towards the day-room.  This time, the manager was nowhere to be found, and although I mentioned it to someone in a uniform dress, the smears and lumps were still in evidence when I paid a final visit at 10pm before taking the boxes to the count.

The following morning, I went to find a colleague on Community Care to ask if there was anything that could be done.  “It’s not about it being unpleasant for me,” I explained, feeling close to tears.  “It’s that if they are that way in front of outsiders, what are they like to the people who can’t get away?  I wouldn’t want my Granny or Grandad in a place where nobody cares if shit gets tracked all over, and I don’t think it’s acceptable for anybody else’s Granny or Grandad, either.”  My colleague hugged me.  “Don’t you worry, I’ll see to it.”

A few days later, I was accosted by the Electoral Registration Officer.  “What do you think you’re doing, complaining about E House’s treatment of residents?  That’s none of your business.  The manager’s threatening not to let me have the hall for elections in future.”  I suggested that we could take it to the Chief Executive, as Returning Officer.  The ERO declined; we both knew which way that would go.

One of my responsibilities at the Council was Ombudsman cases.  Underlying causes of complaints were routine, even trivial matters; what got them taken up by the Ombudsman was maladministration: a failure to ‘do it right’, often compounded by an obstinate refusal to recognise that the aggrieved had just cause for complaint, and frequently aggravated by attempts to blame the complainer for ‘causing’ the situation complained of.

One of the earliest cases in the files concerned a disabled tenant of municipal housing, who had been asking to have repairs and renovations to her home accorded a higher priority, as her condition was being worsened by the current conditions in the house.  The housing officer seemed to have treated the request with extreme jobsworthiness, interpreting any discretion in the housing regulations to mean, “although we could accede to your request, we don’t absolutely have to, – so we won’t”.  It was not until the tenant, after over two years of patient pleading, went to the Ombudsman, that an officer from the Council actually went round to see the state of the place, which, as it turned out, was shocking.

The officer’s report outlined the work to be done, with costs and timescales, detailed the considerable extra costs the tenant had incurred as a result of having to live in an unsuitable property and outlined the weekly amount needed to cover her living expenses in alternative accommodation until such time as the work was finished.  The Chief Executive’s handwritten note in reply was brief. “DO IT. Start NOW. I want a weekly update.”  A further, typed, letter to the tenant apologised fully for the specific failings of the Council, explained the arrangements proposed to remedy them and asked for the tenant, if she agreed, to telephone her approval to the Chief Exec’s office so that delays could be kept to a minimum.  It also requested permission for the Chief Executive to visit the  tenant once the works were done, so that he could satisfy himself that everything had been sorted out.

The final document in the case-file stated that the reporting officer had visited the tenant after the Ombudsman’s case had been closed.  The tenant had had no further problems, was fully satisfied with the way her case had been handled. The officer added, somewhat smarmily, that the tenant had had a number of complimentary things to say about ‘a certain Chief Executive’, for having visited to present her with in-person apologies from the Council, a cheque reimbursing her previous expenditure and flowers and chocolates to accompany a ‘New Home’ card.

That was the Chief.  He was a wily political operator and undoubtedly autocratic, but his fundamental concern – above his staff and beyond the councillors – was the people, whether as a collective, as small groups, or as individuals, whom the Council was there to serve.  I liked and admired him and was very sorry when, a few years later, the Council found itself mired in a scandal whose origins predated his appointment; and, after it all ended in the inevitable disaster, he felt obliged to resign.  Although the causes of the scandal were nothing to do with him, he had been unable to make it go away, and he recognised that someone else needed to take over in order to allow a fresh start with a clean slate.  Like Ed Ray, the Chief accepted that although he had had no power over what had gone wrong, he did have the power to help right it for the future, and he took the necessary action, however unpleasant it was for himself.

The original administrators dealing with Brenda Tracy, and with the Council tenant, were incapable of seeing that they had got things wrong, and badly.  In both cases, there needed to be a change of administration before the people affected by the wrongdoing could be satisfied that they would get redress.

It’s a pity a scandal and an outrage that the current Chief Executive and Board of Southern Health can’t see that they need to go for exactly the same reasons.  They are part of the problem, so they can never be part of any satisfactory solution.  However many times they repeat, “We have made changes”, the people affected by their failings will not, cannot, have confidence in these pronouncements, as long as they are spoken by the same old faces that have already proved themselves untrustworthy and two-faced.

For people to have any confidence in Southern Health, Katrina and the Sloves need to resign. Now.

Running Scared.

Tags

#justiceforLB, #justiceforNico, #Mazars, (un)accountability, independent living, learning disability, Local Authorities, NHS, preventable deaths

Been missing my twitterpal Rosi Reed.  She has had to take time off socmed for health reasons, and I sometimes feel I should join her, in the interests of preserving my sanity.

As soon as Jeremy Hunt refused to promise that the Mazars report would come out before Parliament broke up for Christmas, I, along with the other #JusticeforLB’ers, knew we were in trouble.  The whole shebang was headed for the long grass and tumbleweed territory, and so it has proved.  Today, the 100th day after #Mazars was published, absolutely nothing positive has happened.

Southern Health NHSFT claim their ‘panel’ has reviewed 289 learning disability deaths, but there appear to be no reported outcomes from those reviews, and no information on their nature, scope, processes or findings.  Meanwhile, Sloven Board meetings continue to be opaque to the public, when they are not being downright disrespectful to individual members of the public who exercise their right to attend said meetings.  Katrina Percy and her merry band of nodding yespersons remain in situ, although a number of non-executive directors have jumped (or been pushed).  Among the remaining NEDS, one, Malcolm Berryman, appears to have been guilty of some seriously inappropriate talk over the family table in his moated mansion (and a catastrophic parenting fail in the teaching-courtesy department), since his teenage son popped up on twitter to call Connor Sparrowhawk’s mother a ‘fucking pest‘ for continuing to ask Mazars-related questions.  Needless to say, this indiscretion has not led to any consequences.  Now Sloven are quietly preparing to realise their assets in Oxfordshire through land sales, probably with a view to disinvesting in their unprofitable northern patch.

Although a few individual MPs have continued to ask questions, Parliament as a body has not followed up on the Mazars recommendations; nor, more pertinently, has the Secretary of State for Health, who appears to be evading every opportunity to take executive action.  As Rob Grieg said this morning on BBC Breakfast, it’s hard to avoid the conclusion that the Government does not consider the lives of learning-disabled people to be of any importance.

Since Christmas, I’ve also been grappling with ECHP* paperwork, as Grenouille’s SSEN** was due a major overhaul, which in turn means a switch to the new system.  All the usual, draining nonsense has ensued: lack of communication from the Local Authority; insufficient or inaccurate information in what communication there has been; blind following of ‘our processes’, in defiance of both the law and of simple commonsense, when the ‘processes’ manifestly don’t apply to G’s specific circumstances; layers of bureaucratic obfuscation; and a hefty helping of plain mulish obstinacy.  “Just go with it, and we’ll Tribunal ’em,” said G’s Papa, wearily.  I have persisted, because if we go down the Tribunal route (again), the chances of things being sorted before next academic year are hair-thin; but I resent doing, for free and at length, the admin that someone in County Hall is well paid ostensibly to be responsible for.

At the same time, Parliament has voted to cut Employment and Support Allowance – a benefit set at a level intended to sustain people for the medium to long term for people in the ‘Work Related Activity Group’,  to that of the short-term Job Seeker’s Allowance. This means a permanent 28.5% reduction to the income of anybody who, while unable to work now, might be able to do so at some future point, however distant (and it could be years… or never).

Personal Independence Payment criteria have been tightened to the point that some people are losing their Motability cars, their jobs, their homes and their independence.  In the Budget, the Chancellor proposed to cut PIP still further, to ‘save’ £1.2 billion a year, and only the Brexit-directed flouncings of the Secretary of State for Work and Pensions prevented the proposal becoming immediate reality.

 The Health Secretary, the smooth-spouting Jeremy Hunt, is locked in a patently stupid dispute with the junior doctors and his strategy for providing himself with a way out appears to be ‘keep kicking until I’ve made a big hole the NHS’.

Finally, the current Education Secretary, Nicky Morgan, has out-Goved her predecessor by announcing plans for the forced academisation of all State schools in England.  The ideologically-driven bonkersness and economic illiteracy of this notion is beautifully dissected in this blog; but the effects on Special Needs Education of effectively abolishing the bodies – the Local Education Authorities – charged with specifying and ensuring individual provision, adds a further layer of horror to the gruesome prospect.  Academy schools don’t ‘do’ SEN.  They are supposed to, but there are no meaningful sanctions for their failures or refusals.  When we were looking at secondary schools for Grenouille, the local Academy school was the only one at which we couldn’t get an appointment to view with the SENCO, despite repeated requests and despite the facts that it is (a) our nearest school and (b) the one that Eldest attends.

Yes, Local Authorities have to be watched like hawks over EHCPs, and it’s a pain and a headache to keep them up to the mark, but the marks are there, and so are the legal levers, and the links to local education establishments.  At the end of the day, it sort of works, after rather string-and-safety-pins fashion.  We certainly couldn’t ask for a better school for G than the one we ended up naming, but it’s hard to see how the school could have accommodated G, were it an Academy.

So what will there be for Grenouille, if all this goes through, after all my days and weeks and months and years of caring and researching and learning and writing and meeting and persisting?  No place in the academised, privatised school system (Special Needs provision is costly, not profitable), so unequal access to education?  A lifetime of pauper-level income and severely limited prospects for work, leisure and healthcare?  And a premature, care-less and ignored death?

I’m seriously frightened.

*Education, Health and Care Plan
**Statement of Special Educational Needs

The Perpetrator.

Tags

#justiceforLB, (un)accountability, true stories, voices of disability

Sunday mid-morning and I am standing at the kitchen counter in a domestic trance (peeling carrots, listening to the Archers Omnibus on the radio and not paying much attention to anything else) when I am rudely interrupted by a stinging swipe across my backside.  The carrot and the peeler clatter on to the worktop as I wheel round.

“Ow, gerroff, Grenouille!  I wish you would give over with this swatting my behind malarkey!”

G’s face is alive with unrepentant mischief.  “It wasn’t me.  It was the Invisible Man.”

“In a pig’s ear it was the Invisible Man, you wee monkey.”

“Have you seen him?”

“Seen who?”

“The Invisible Man.”

“Eh?  Of course I haven’t seen the Invisible Man.”

“That proves it.”

“Proves what?”

“If you didn’t see him, it was the Invisible Man.”

Well, it’s at least as logical and convincing as some of the excuses I’ve been hearing elsewhere lately.