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Who By Fire

~ High ordeals and common trials

Who By Fire

Monthly Archives: Sep 2015

Weekend Warrior.

23 Wed Sep 2015

Posted by Kara Chrome in Uncategorized

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Tags

true stories, voices of disability

Sunday morning.  I am in Grenouille’s bedroom, setting out medications and switching off the overnight machines, before starting to unwind G’s bedclothes, which have somehow got twisted over and over into a thick rope.  G’s eyes open.

“Mornin'”.

“Good morning”, I say, tugging at the sheet, “and goodness me, whatever has happened here – have you been fighting crocodiles in your sleep?”

G gives me an old-fashioned look, then disappears briefly as I finally get the sheet pulled up flat to the head of the bed.  I straighten and smooth the quilt and fold the linen back down over it.

G, reappearing, says decisively, “Actually, no.  Bad guys.”

There is a beat’s pause, then G adds, “I don’t like crocodiles.  Much.  But bad guys are worse.”

Non-Adversarial Proceedings.

10 Thu Sep 2015

Posted by Kara Chrome in Uncategorized

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Tags

#justiceforLB, Connor Sparrowhawk, coroner, inquest, Oxfordshire County Council, Southern Health NHS Foundation Trust

LB Balloons

With raging sympathy to Dr. Ryan and all of Connor’s family,
and with profound thanks to George Julian for live-tweeting,
on the @LBInquest timeline,
the admirably lucid summary of proceedings reproduced below.

Justice for LB ‏@JusticeforLB Sept 8
Tomorrow is the 4th Pre-Inquest Review (PIR) meeting and we’ve set up a dedicated @LBInquest account for those interested in the detail.  #JusticeforLB

LB’s inquest ‏@LBInquest Sept 8
Final pre-inquest review meeting takes place tomorrow, 2pm, County Hall, Oxfordshire. PIR to include witness statements and jury questionnaire.  #JusticeforLB

LB’s inquest ‏@LBInquest Sept 9
We’ve set up this account to record LB’s inquest; final Pre-Inquest Review meeting today. Plan to tweet what’s said, not opinion or commentary.

 LB’s inquest ‏@LBInquest Sept 9
Pre-inquest review meeting 4 starting shortly; we’ll be live tweeting what is said from this account.  #JusticeforLB

***

Coroner, Darren Salter, introducing this 4th pre-inquest review meeting (PIR) heading towards jury inquest Mon 5 Oct.

Representatives for 6 interested parties @sarasiobhan (Dr. Ryan, LB’s mother) @Southern_NHSFT (Southern Health NHS Foundation Trust, aka ‘Sloven’, the Health Service organisation responsible for the unit where LB drowned in the bath), Dr Murphy, Dr Jayawant, Mr Morris (senior nurse at STATT during LB’s time there), Mr Cowee (also senior STATT nurse during LB’s stay) introduced.  #JusticeforLB

Today’s PIR will discuss witness statements and who should be called to give evidence at @LBInquest  #JusticeforLB

Interested persons have the right to take part in the inquest, give evidence and ask questions.  #JusticeforLB

Coroner (DS) updating that Police investigation will be closed with no further action following report from Professor Crawford (an expert on epilepsy, appointed by the Coroner to produce a report for the investigation.) #JusticeforLB

DS reports Police investigation has been handed over to HSE who are seeking further evidence from Prof. Crawford.  #JusticeforLB

Scope of @LBInquest: LB’s admission to unit, management of epilepsy, care planning and risk assessment, medication, observations, record keeping.

Discussion about Mental Capacity Act and DOLs now also fall within scope of @LBInquest.  #JusticeforLB

Coroner has tried, and failed, to track down Lenka Mullerova (a member of Trust staff; not key to the inquest, so dismissed). Belief that she has gone to Africa to work.  #JusticeforLB unable to reach her.

Coroner suggests @sarasiobhan give oral evidence and Richard Huggins’ (LB’s stepfather) statement be used in part.  #JusticeforLB

@caoilfhionnanna (LB’s family’s barrister) suggesting to Coroner that @sarasiobhan be called twice to give evidence, once at start and once later.  #JusticeforLB 

@Southern_NHSFT arguing that only one family member needs to give evidence, cannot agree with including Richard Huggins’ statement.  #JusticeforLB

@Southern_NHSFT are ‘reluctant to challenge a bereaved family member’, so wish Richard Huggins to be excluded from giving evidence.  #JusticeforLB

Coroner will include Richard Huggins’ statement in the evidence; it’s contested, so … Coroner rules Richard Huggins will give oral evidence to @LBInquest. (Mr. Huggins’ evidence is) relevant to communication, therefore is within scope.  #JusticeforLB 

Coroner doesn’t see need for Robyn Noonan (@OxfordshireCC #socialcare commissioner) to give oral evidence.  @LBInquest.  #JusticeforLB 

@caoilfhionnanna makes the point to Coroner that Robyn Noonan’s statement contains disputed factual information.  #JusticeforLB

@caoilfhionnanna explains to Coroner why Noonan’s statement is unacceptable; it contains matter outside (the Inquest’s) scope from someone who didn’t know LB.  #JusticeforLB

Coroner asking @Southern_NHSFT barrister if Trust has a view on issue; Trust is neutral on evidence, believes Coroner could introduce it.  #JusticeforLB

Coroner rules @OxfordshireCC commissioner’s statement by Robyn Noonan is excluded from the evidence.  #JusticeforLB

@Southern_NHSFT are ‘more than happy’ for @sarasiobhan to give evidence but don’t wish her to have two opportunities.  #JusticeforLB

Coroner not sure @sarasiobhan needs to give evidence twice; Coroner suggests he reads context evidence at start.  #JusticeforLB 

@caoilfhionnanna explains why suggestion was made that @sarasiobhan give evidence at start and later in process.  #JusticeforLB 

Coroner will read introductory context and @sarasiobhan will give evidence towards end of inquest process.  #JusticeforLB

Coroner outlining his suggested running order for @LBInquest.  #JusticeforLB 

Detail of timetable now being discussed; a lot depends on how many questions and how contended.   #JusticeforLB 

There are two weeks set aside for @LBInquest.  Coroner not sure should take all of that time, but it is available.  #JusticeforLB

Discussion between @Southern_NHSFT barrister and Coroner about whether the expert, Prof. Crawford, should attend whole inquest.  #JusticeforLB 

Coroner confirmed that Prof. Crawford will be the last witness to give evidence to @LBInquest.  #JusticeforLB 

Pathologist will attend on first day and give evidence.  @Southern_NHSFT barrister requesting pathologist be available throughout @LBInquest.  #JusticeforLB 

@southern_nhsft barrister states @StevensLesley (Medical Director at Southern Health) will give evidence about what has happened at Trust since LB’s death.  #JusticeforLB

Coroner will take submissions at start of @LBInquest about who should go last: @Southern_NHSFT @StevensLesley or Prof. Crawford.  #JusticeforLB 

Coroner and legal teams still discussing running order of the @LBInquest.  #JusticeforLB 

Legal teams now discussing timing suggested; Coroner and the parties’ lawyers to decide/confirm further in coming week in advance of @LBInquest.  #JusticeforLB 

Coroner needs to chase Jessica Constable for witness statement; she completed LB’s admission and assessment.  #JusticeforLB 

Coroner considers Prof. Crawford’s additional report for the Police dealt with prosecution not @LBInquest so doesn’t consider it relevant.  #JusticeforLB 

Coroner clear that @LBInquest is not dealing with criminal matters so additional Prof. Crawford report excluded.  #JusticeforLB 

Mr Cowee’s ‘watching brief’ thinks he wishes to file a statement, Coroner happy to receive as he is an interested person.  #JusticeforLB 

Dr Jayawant wasn’t intending to provide a witness statement because she has made one under Verita 1 investigation.  #JusticeforLB 

@Southern_NHSFT requests that Dr Jayawant provide an InIIadditional witness statement about EEG referral and LB’s seizure activity.  #JusticeforLB 

Coroner has obtained recording of call to ambulance service that showed who had called them (not who was initially said).   #JusticeforLB  

@Southern_NHSFT’s @StevensLesley has still not provided a witness statement to the Coroner; she now has 7 days to do so.  #JusticeforLB 

Coroner now discussing what should be contained within the bundle of documents that will be given to the jury.  @LBInquest.  #JusticeforLB 

Coroner requesting that @Southern_NHSFT include photographs and floor plans of STATT for @LBInquest jury.  #JusticeforLB 

Discussion about when Prof. Crawford’s report should be shared with the jury of @LBInquest.  Decision will be made in next few weeks.  #JusticeforLB 

@caoilfhionnanna points out some of the witness statements have unexpected sections addressing witnesses’ relationship with @sarasiobhan.  #JusticeforLB 

@caoilfhionnanna makes clear to Coroner that family not happy with character assassination sections within witness statements.  #JusticeforLB 

These sections are from @Southern_NHSFT  staff, offering views on @sarasiobhan‘s personality and character.

Coroner is mindful of issues and will seek to prevent any further distress during  @LBInquest.  #JusticeforLB 

@caoilfhionnanna now requesting missing documents referred to in @Southern_NHSFT witness statements.  #JusticeforLB 

@Southern_NHSFT legal counsel will update Coroner by Monday once IT department have searched archive.  #JusticeforLB 

@Southern_NHSFT counsel explaining two documents will be released by them on Friday relating to LB’s care plan.#JusticeforLB

@caoilfhionnanna asks about why this is being released now and not before; and  how they can check validity of evidence?  #JusticeforLB 

Coroner ‘slightly concerned’ this has not been produced before; will take submissions once it’s been produced and seen.  #JusticeforLB 

Further discussion about who will give evidence.  #JusticeforLB

Discussion moves onto who should be allowed on the jury; @JusticeforLB requests no current/former @Southern_NHSFT employees … also request no current/former Ridgeway staff or @OxfordshireCC Children’s Services or #socialcare staff on @LBInquest jury.  #JusticeforLB

@Southern_NHSFT wish to exclude any jurors with knowledge of LB’s case or associated blogs for @LBInquest.  #JusticeforLB

13 jurors called to attend, need 7-11 to hold inquest, ideally 9.  #JusticeforLB 

Agreement current/former employees or people with close family members working for @Southern_NHSFT Ridgeway or @OxfordshireCC #socialcare will be excluded.  #JusticeforLB 

Now @Southern_NHSFT are arguing Coroner shd have access to draft Verita 2 appendices of @NHSEngland commissioned report.  #JusticeforLB

Coroner is clear @LBInquest is a separate inquiry; he will approach @NHSEngland about it.  #JusticeforLB 

That’s it. PIR 4 is done; we’ll be back for the inquest on 5 October.  #lbinquest  #JusticeforLB

Until the legal process is complete, comments will be pre-moderated.

Common Trials: The Three-Legged Annual Review Race.

08 Tue Sep 2015

Posted by Kara Chrome in Uncategorized

≈ Leave a comment

Tags

Annual Review, EHCP, Local Authorities, Special Needs Education, SSEN

Ah, Annual Reviews.  Tra-la.  The yearly revision of one’s child’s Statement of Special Educational Needs.  Whoopee-doo.

The three ‘legs’ of an SSEN are the same as for any plan: principles (that children with extra needs should get extra support); strategy (definition of what needs are eligible and what support is required to meet them); and tactics (how the support to meet needs should be provided).  In education, leg 1, principles, is solidly enshrined in legislation and statutory guidance.  Legs 2 and 3 are the ones constructed out of devilish detail that provide the subject matter for near-endless argument between parents and public bodies, with the occasional bit of case-law as an island of reliable solidity in the shifting sands of negotiation.

Grenouille has a very good Statement.  Acknowledgement once again to the wonderful IPSEA charity who were so helpful to us in getting it right.  I did most of the leg-work, but they provided trained-volunteer and qualified-lawyer support, which kept me going when the going got hellish rough.  Having a trained person to assure me that it wasn’t I, but the LA, who was way off-beam, and a proper barrister to bolster my barrack-room skills when I had a pre-Tribunal crisis of confidence, was beyond price.

Statements are portable.  If you have to move, the new Education (Local) Authority may, if it chooses, review the Statement; but until it does, it has to continue to provide education and support in accordance with the existing document.  However, although the content of a Statement was prescribed by statute and regulation, the format was only outlined; how authorities chose to write needs and provision into the required sections was up to the Authority. When we moved to Authority #3, their senior Special Educational Needs officer was clearly baffled by the very wordy format of Grenouille’s original Statement and suggested rewriting it in their concise, tabulated layout.  However, when it came down to it, the rewriting seemed to involve preserving most of the boilerplate text and minimising the individualised stuff that it had taken me 22 months to get included, so I demurred.

The next big push from LA#3 came at the time of Grenouille’s Transition Review for the move to secondary school.  Transition Reviews are done earlier in the year than routine ones. The senior SEN officer rocked up for the Transition Review, and we had a long and (I thought) positive meeting, at which it was (I thought) agreed that it wasn’t worth extensively rewriting the Statement given the then-imminence of Education Health and Care Plans, but that there would need to be some support-enhancing changes made in view of the extra demands that would be placed on G by the move to secondary school.

Version one of the proposed revised Statement contained nothing at all about support at secondary school and cut Grenouille’s existing support hours with immediate effect.  It turned out that because the primary school had – erroneously – been providing the support hours from within their existing budget rather than making a special claim for them, the Education Authority had assumed that Grenouille didn’t need and wasn’t using said hours, despite the Statement setting out in exhaustive detail why and where they were required.  Needs, schmeeds.

All power to the school: the SENCO went into overdrive and wrote a smouldering screed to the SENA unit, with the upshot that Grenouille’s secondary-school support hours were increased to full-time.  Result.

Over the summer holidays, I still had to tackle the issue of transport (score 1 to Team G).  Then it took the whole first term to get Grenouille’s therapies up and running, as the LA didn’t bother to note that they were Part 3 (educational) not Part 5 (non-educational) provision.  Once again, an IPSEA recommendation – to threaten judicial review – did the trick (score 2 to Team G) but while I didn’t have to spend any money, the process was a long way from free of costs to me.  And, of course, it cost Grenouille five months of therapy.

So you can probably see why Annual Reviews are not my Favourite Thing.  This year, the SEN officer didn’t bother to come – Grenouille is not due to transition to an EHCP yet, so it was left to the school.

For those of you who haven’t done them personally, Annual Reviews involve asking all the interested parties – child, parents, school, therapists and Authority – for any contributions they would like to make.  These can be written reports or oral submissions at the Review meeting.  Grenouille used to get a sheet of A4 on which to write or draw ‘What I think is working well for me’ and ‘What I would like to change’, but this year, a PowerPoint was emailed home for completion, with slides headed:

Grenouille’s Personal Profile
What I Like Best About Myself
Important People In My Life
I Like To…
It’s Important To Me Now To…
To Stay Healthy and Safe, I …
What I Do If I Feel… (happy/sad/angry/frustrated/poorly/other)

before coming to

What’s Working For Me
What I’d Like To Change
What I’d Like To Do When I’m Older.

Grenouille discussed this with me and completed it over the course of a week or so.  The ‘What I’d like to do when I’m older’ section contained three items: ‘Be a <chosen profession>. Do <two chosen hobbies>.  Live in my own house and have a service dog’.  G presented the PowerPoint at the meeting, but most of the questions about it were put to me.

Over the years, this has become a source of annoyance to me, (medical settings are especially bad for it), so I did my usual and referred the questions on to G: “Can you remember what we talked about when…?”  “What did you say to me when I asked you…?”  “What did you want me to do about…?”  Never mind being self-directed, Grenouille is an absolute whizz at organising other people or at least, those who are prepared to listen (G has learned not to try to organise Eldest, who has a well-honed selective deafness routine).  One of the other people at the meeting said, in tones of great surprise, “I’ve never heard before of someone having such detailed advance discussions of the Annual Review with their child like this,” a statement which I found quite as astonishing as they apparently found us.

I wouldn’t dream of telling Eldest what to think, although I’m happy to listen as he works out and puts meat on the bones of his ideas, and to explain where and why I agree or disagree with him.  So why, why would I be any different with Grenouille?

When G was tiny, of course I felt responsible for all three legs of the Statement.  I was pushing for the principle that Grenouille, even a non-verbal Grenouille,  was entitled to the same educational chances as any other child, which meant working out what support was needed, and, as it turned out, advocating and monitoring to ensure the support was suitably provided.  But G’s a teenager, not a toddler, now, and has internalised the principle that a normal, fulfilling life is everybody’s right.  With a little scaffolding and structure, G is getting pretty good at strategy, too.  Tactics will come, although I expect some sort of support will always be necessary to get the details right.

Perhaps the person in the review was right to be surprised, though. Statementing is supposed to be a collaborative venture between Authority, family, healthcare and school.  Instead, it often feels more like a competition, a tug-of-war over provision, or a sort of bean-bag race between family and State to get resources chucked into the child’s or the Authority’s pot.

Next year, Grenouille will ‘be transitioned’ onto an EHCP (Education, Health and Care Plan).  I am dreading it.  I know in my bones that the LA won’t want to do a complete job.  I have already been told that the practice is to ‘port’ Statement provisions into the EHCP, which will be fine by me for the E bit, but Grenouille needs the H and C parts, which don’t appear in Statements, to be done properly.  The Plan will last Grenouille into the second half of the 2020’s, so I am not prepared to let something half-baked come out of the process.

So for next year’s Review Race, I am getting in training.  Now that Grenouille is back at school, I’m about to start a Foundation course in current SEN law, and am hoping it will give me – and G – a good headstart when the starting-gun fires on the race to the EHCP.   It will be against the clock, a sort of supermarket-sweep trolley-race.  We have 20 weeks of ‘transition window’ in which to amass and fix in position as much as we possibly can of what Grenouille needs.

Wish us luck!

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