Adulting.

Tags

adult LD services, assessment, care in the community, Local Authorities, NHS, true stories

So cheesed off. It’s the longest day of the year and I think I can say without fear of contradiction that the gold-to-tailings ratio of events chez Chrome in the first six months of 2019 has been notably poor.

Between Christmas and Easter, Grenouille had two bouts of gastro problems that put every other system in G’s body out of kilter, and resulted in a fortnight of bed rest each time.  Bed rest for G means next to no rest for me; as the only adult in the house, Monday to Friday, I get to do 24-hour lone-pilot duty.  For a whole month.  Yippee.

The run-up to the Brexit-that-didn’t in February and March was hideous. Along with hundreds of thousands of other Britons, G’s continued existence relies on European-manufactured medicines whose supply could not be 100% guaranteed in the event of a no-withdrawal-agreement crash-out.  One of the most discouraging things about it, was Brexiters among the people I’ve thought of for decades as friends, telling me to stop drama-queening and whinging on, it would all be ‘fine’.  It didn’t seem to matter to them that I had done the research on current stocks, usage and likely blocks to replenishment, and was genuinely frightened for G’s life if there were to be chaos at customs and gaps on pharmacy shelves. 

In the last week before 29 March, I felt physically ill with apprehension.  The news lurched from the one million march, via a failed Chequers summit, cliffhangers of indicative votes, to desperate resignation-for-a-deal offers from the Prime Minister, before a last-gasp third meaningless ‘meaningful’ vote – on (non-)Brexit day itself – put leaving off for another month or two.  I lurched from feeling sick with fear, to feeling sickened with relief, knowing that it would all come round again in May, or June, or October.

G is expected to have some major surgery in the nearish future.  It was supposed to happen last year, and didn’t, and then it was supposed to happen in the early part of this year, and hasn’t, and at the rate we are going, it may not happen by Christmas either.  However, its alleged imminence has meant that we haven’t been able to plan anything.  Holidays, work trips, visits to friends and family, have all been put on hold or organised in a last minute scramble.  It’s an unpleasantly stuck-in-limbo way to live.

E came home in April, for the week before Palm Sunday.  I drove him back to university and returned home feeling cramped and numb after the long round trip. The next day, I could not feel my right leg at all from the waist downwards and my left leg was without sensation down the back.  I could still walk, but my proprioception was badly off.  My legs felt like your face does after the dentist gives you an injection for a filling – movable but dead.  The GP told me not to drive any more and referred me to the hospital for an MRI and ultrasound scans.  I spent the whole of Maundy Thursday as a day-patient on the orthopaedic ward, feeling somewhere between prematurely aged and ridiculously juvenile, as all the other women in my bay were in their 80s and 90s.  After enduring  a lot of poking and prodding, two claustrophobic passes through the scanner (being maddened by the beat of reggae played through the headphones clashing with the unsynchonised ‘Whum-whum-whum’ of the machine) and a remote consultation with the regional neurocentre, I was diagnosed as having half a dozen ‘dehydrated’ and bulging discs in my neck and lower back pressing on various nerves.

I asked about physio. You have to self-refer these days, a complicated process involving a massive online form and random appointment times.  I can’t do random; events have to fit into G’s timetable, or they don’t happen, so I spent a couple of weeks’ Carer’s Allowance on three 20-minute visits to a private physio instead. Two months and a lot of exercises later, I just have numb soles to my feet, a very sore right knee and a healthy aversion to carrying heavy shopping.

During the Easter holidays, the transition social worker and a commissioner from the CCG came and did an initial assessment of G’s future care needs.  They decided that a full assessment for continuing health care was needed, and came back in the May half-term, with another nurse, to do a full assessment. Three and a half hours of trying to explain all G’s healthcare needs, and it barely scratched the surface. The outcome arrived ten days ago: a resounding ‘No’.

Unfortunately there are some things that G needs help with, on a daily basis, that Local Authority social care workers simply will not be permitted to do. Even the medical respite Health Care Assistants are not allowed to do them, only registered healthcare professionals (i.e. nurses or doctors…) and, of course, good ol’ Mum and Dad. So the decision needs to be appealed, and guess who has to do it?  Not the transition social worker, who, you would think, would have a far better idea of these processes than I.  Nope, the whole shebang has been dumped in my lap, while the social worker, jammy besom, has swanned off on holiday.

I put out a slightly panicked appeal on Twitter and got some very useful feedback (thank you, peeps).  I contacted a disabled people’s support charity and a solicitor.  I compiled a list of relevant legislation, statutory guidance and case-law, tracked it all down on the Web and read grimly through it.  It was like being hurled back fifteen years to when I was desperately researching Statements of Special Educational Needs, up against the deadline of G starting school, except this time my deadlines are a lot shorter.  I got a snakes-and-ladders feeling that I’d slid right down the massive python that spans the board from 99 to about 8.

And today, on the longest day of the year, the first properly sunny day we’ve seen for well over a week, I sat down in front of the computer, with about 23 tabs open in the browser, and piles of paperwork all over the desk, and spent the best part of eight bloody hours composing a long appeal email.  Finally, it was finished.  I went to make myself a hard-earned cup of tea before G came home, and in the ten minutes I was gone, Windows decided to do a software update and restarted the computer. Without saving my as-yet-unsent email.  I stared at the screen in disbelief.  I rummaged in the ‘Draft’ and ‘Deleted’ folders, but I had been working on the email offline.  It was gone forever.

A key rattled in the door and G came in from College.

I burst into tears, big gasping sobs and howls.  G was, not unnaturally, highly alarmed, and did not find my explanatory wails in the least reassuring.  I babbled apologies, but I could not stop crying.  G presented me with the phone: “You need to call Daddy.”  I keened down the line at P for a bit, but he was struggling to make sense of the bawled and mangled syllables that assaulted his ears, and in the end I told him I wasn’t fit to be talked to and hung up.  G propped the iPad in front of me, a favourite song already open in YouTube. “Music might help, Mum, it calms me down when I’m sad.  Would you like a hug?” I accepted the hug, and listened to the songs, and after a while felt the misery and fury begin to recede. I still couldn’t remember a single thing that I had written.  I knew there were six heads of argument, but what they were I had no idea.  Every single one of them had vanished.  My head felt as empty as a blown egg.

Slowly and methodically, I began saving the URLS on the open tabs and closing them down. Couldn’t face trying to reconstruct a whole day’s work until I’d had some time off.  I stacked the paperwork and put it to one side. I looked out of the window at the sunshine on the garden and thought of cooking and the various other chores awaiting my attention, and then I thought, what the hell, and opened up the Spider Solitaire.  I am, I thought, sick to bloody death of adulting, I’m going to be mindless and irresponsible for a bit.

I was halfway through the second game when G came in and plonked a pink post-it note on my desk.  I deciphered the lopsided writing and thought, whatever anyone may want to say about G’s academic accomplishments, there’s no denying that my Froglet has Mensa-level emotional intelligence. G’s 18th birthday is still a few months off, but the adulting thing?

Nailed.

(Mum (k)now how feeling but never give up it is hard).

The Chair of Anthropolyatrics.

Tags

#justiceforallthedudes, #Mazars, adult LD services, learning disability, Local Authorities, NHS, Richard Handley

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*****

*****

PS – Friday 02 February 2018

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

 

Chains of Love.

Tags

#justiceforallthedudes, #justiceforLB, Connor Sparrowhawk, learning disability, Local Authorities, NHS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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.

Here Come The Girls.

Tags

#justiceforallthedudes, care in the community, independent living, institutions, kindness, Local Authorities, NHS

Six weeks ago, I was wondering, “where are the girls?”.  A couple have emerged onto social media since.  Although neither is in exactly the same situation as the lads who featured in The ATU Scandal #7DaysofAction, I am noticing same old themes of waiting until a situation turns into a crisis, counterproductive provision, failures to keep safe, the dangers and indifference of total institutions, isolation, the powerlessness of loving families, the difficulties of leaving an ATU, financial skewing that makes it advantageous for mental-health provision to hang on to people and disincentivises Local Authorities from bringing them home, and terrible, all-pervading, stress and fear for inmates and families alike.

Sophie doesn’t have a learning disability, as far as I am aware, but she does have bipolar disorder.  She is currently in St. Andrew’s hospital in Northampton.  This hospital, a very large one headquartered on the old Northampton ‘lunatic asylum‘ site, is not actually part of the NHS; it is a private institution with charitable status that bids for NHS contracts.  Sophie’s family, who live in Middlesex, have concluded that the hospital is not suitable for Sophie.  According to the petition for her transfer, it’s making her life and her family’s life hell.  The family have tried everything they can think of to get her home, but “nothing works”.  Her family believe she is treated badly where she is and is not kept safe.  Sophie has managed to self harm on many occasions, sometimes very seriously.  Her family are ‘desperate’ to have her closer to home so that they can support her.  They say: “Sophie is 21, she is a beautiful, caring, lovely young lady who just wants to be with her family.  She suffers with bipolar but she is not a criminal, so she should not be locked away like a prisoner.  To be honest, prisoners have a better quality of life than Sophie does in St. Andrew’s.  She doesn’t receive basic human rights and is not kept safe.  We need her closer to her loving family.”

The second young lady is not in an ATU – yet.  Her name is Emily, she is 19 and profoundly disabled by her autism and learning disabilities.  She needs 24-hour, 3:1 care.  For the last few years, she has been living in a residential school with visits to her parents’ home in Shropshire, but in less than three weeks, when term ends, she will have aged out of the school system.  So far, she doesn’t have anyplace else to live either, despite her family’s long-running and increasingly frantic efforts to find her a home of her own with proper supports.

They have been through all the hoopla of trying to secure her a liveable income (which was initially denied) and a house.  They have been asking their Local Authority and Social Work departments for help and support, which has been in very short supply and seems mostly to have consisted of ‘signposting’ to providers.  Wrong boxes were ticked by official form-fillers, meaning that Emily has missed out on some potentially suitable houses.  Those which were offered are all unsuitable for one reason or another – too far from family, too small, too insecure.  The only currently empty property which, according to Emily’s swathe of professional therapeutic and medical reports, is suitable, is said to be in leasehold limbo between the Council and the Housing Association.  Apparently, it will not be made available to Emily anyway, because it is earmarked for adults returning from ATUs.  But if Emily doesn’t have somewhere of her own to live in two-and-a-half weeks’ time, she will end up in an ATU.  Her family have been told that, absent a home of her own, there will be no other options.

Let’s just think about that for a minute.  Emily’s education, health and social care professionals have known for nearly two decades that Emily will always need care and support.  Her 18th and 19th birthdays can have come as a surprise to no-one.  Yet there has been no forward planning for the end of her schooldays.  Unless someone does something very soon, Emily will be placed in a facility intended for (a) assessments (which have already been done – exhaustively), and (b) treatment (which she doesn’t need and which can’t help her since she has autism, not a mental illness).  She will be in uncongenial surroundings that will be very likely to exacerbate her difficulties with making sense of the world, and she probably will be subject to the forensic, carrot-and-stick, behaviour-modification-restraint-and-heavy-medication regimes that have left too many dudes in a terrible state; and the prospects of which have Emily’s mother in agonies of terrified apprehension.

Yesterday, whilst her father was travelling to visit yet another far-flung shoebox property remote from Emily’s family and home town, the car encountered a pothole that has left it inoperable due to suspension problems.  It’s not the only thing that is breaking down.  If Emily ends up in psychiatric care, I fear her Mum may just be driven to join her, as the strain is very obviously getting to within a whisker of being too much for her.

*****

*****

Health and Capacity.

Tags

#7DaysofAction, #justiceforallthedudes, assessment, autism, care in the community, learning disability, Local Authorities, NHS

So I was doing some background reading for a piece I was writing for #7DaysofAction and it involved trying to get a good grasp on the Mental Health Act 1983 (as amended by MHA 2007) and the Mental Capacity Act 2005 as they apply to ATUs and other NHS provision, in order to understand how what has happened to so many autistic young people came to happen.

For a non-lawyer, it was a bit of a brain-melt.

The Mental Capacity Act is intended to protect people who lack capacity to make their own decisions.  If there is a reason to suppose that a person is incapable of making a particular decision because of a cognitive impairment, then someone else can be designated to make that decision in the person’s best interests.  The decision-maker has to take into account the person’s preferences and ensure that in each case, the decision made is the ‘least restrictive option’.  When it comes to decisions around where a person should live, there’s a whole extra layer of protection – the ‘Deprivation of Liberty Safeguards‘ or DoLS – intended to make sure if a person is in hospital or a care home, that person lives in the least restrictive environment that can meet their needs.  The Safeguards require the professionals making the decision to show that the proposed restrictions on the person’s liberty are in his or her best interests, and to arrange for the person to have independent support (an Independent Mental Capacity Advocate, or IMCA) to help evaluate and challenge the restrictions.

So far, so good; but the DoLS require the organisation which is applying for a DoLS authorisation to restrict someone’s liberty, to certify that the person ‘has a mental disorder’; and to consider whether they should instead be considered for detention under the Mental Health Act.  The MHA is much more wide-ranging than the MCA; while the MCA is exclusively concerned with capacity, the MHA provides for a plethora of situations in which people may need to be compulsorily treated for a mental illness, including where they are a danger to themselves or others, and where they have committed or are accused of a crime.  Although the statutory guidance under the Act – the Mental Health Code of Practice – says that the person receiving treatment should be involved in its planning, that his or her wishes should be taken into account, that family and/or carers should be involved unless the patient asks for them not to be, and that treatment should be given the least restrictive way possible, this sits uneasily with the forensic, criminal-justice parts of the Act.  Patients are also supposed to have support from an Independent Mental Health Advocate (IMHA) to enable them to understand their rights and  to support any appeal to Mental Health Tribunal against continued detention.  Yet even when the person is detained under civil provisions, the treatment regime for patients with learning disabilities seems to have a strong forensic flavour, along the lines of: demand complete compliance with a regime of generic treatment and prescribed behaviours, unmoderated by any reference to the person’s particular condition(s) and needs; and apply restrictions and sanctions for any failure to comply.  Look at what is happening, today, to Eden and Jack.

The Mental Health Code of Practice was extensively revised in 2015, in the last few months of the Coalition government.  It now contains a whole, separate chapter on learning-disabled and autistic people and the relevance of the Mental Health Act to their care.  It is explicit that inpatient services are not relevant to people with autism or learning disabilities who are not mentally ill; that long-term residence in NHS care is not appropriate.  It contains the phrase, ‘hospitals are not homes’ and is clear that behaviour is communication and that ‘challenge’ is often incorrectly construed as the person being challenging, when it is actually the environment that is challenging the person.  The 2015 Code says that the Mental Capacity Act should be considered and applied along with the MHA; no more MHA automatically trumping MCA.  Read it for yourself.  Chapter 20.

‘Treatment’ is often not appropriate or even applicable: what people need when they are finding the everyday world difficult to navigate, is support.  And a person doesn’t need to be in hospital to get support.  In most cases it can be perfectly well provided in their own home.

A year on, the recommendations of the Code of Practice are taking far too long to trickle down into practice, which is why I am delighted to see that five families are collectively challenging the lawfulness of their autistic and/or learning-disabled family member being detained under the Mental Health Act when it is not (or is no longer) true that:

(a) he is suffering from mental disorder of a nature or degree which makes it appropriate for him to receive medical treatment in a hospital; and
…
(c) it is necessary for the health or safety of the patient or for the protection of other persons that he should receive such treatment and it cannot be provided unless he is detained under this section.

I wish the dudes and their families all the best and have everything crossed for a definitive win, because at the moment, MHA culture seems to be eating policy and strategy for breakfast, elevenses, lunch, afternoon tea, dinner and supper.  Here’s hoping the law will prove a lot chewier.

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

Positive Outcomes.

Tags

#justiceforLB, Connor Sparrowhawk, inquest, LB Bill, Local Authorities, NHS, preventable deaths, Sloven Health

Friday afternoon.  The verdict finally came in at LB’s inquest.  In an ‘you don’t need a weatherman’ kind of way, the jury’s questions to witnesses had suggested they were finding the family’s perspective on events more convincing than the Trust ones.  Still, the extent of what the jury eventually found was more than I, for one, had dared hope for.

They didn’t buy the ‘died elsewhere’ finagle, stating firmly that Connor died in STATT, not at the John Radcliffe Hospital.  They said that his death was ‘contributed to by neglect’ and set out a laundry list of serious failings, both within the unit, and beyond it.

It was exactly the right verdict, and the only shame was that it had taken so long to arrive: 824 days, to be exact.  I watched the BBC news segment and hoped Connor’s family weren’t feeling too poleaxed by the media interest.

After Dad’s inquest finished, I remember being a peculiar mental place where most of my thoughts seemed suspended, but also twin-tracked.  My body, voice and volition still seemed to be operating effectively, and one track of my consciousness was observing and noting this with rather surprised approval.  The other track seemed to be running through an empty cavern of what just happened? so vast that all I could hear were echoes of thoughts that petered out into nothingness.

I remember handing out the family statement to the journalists and saying brief goodbyes to my mother and siblings; and then, of all the bizarre things, rushing to a shop to pick up a Dalek costume for Eldest, who was off to a Dr. Who convention the next day.  I know I had just enough time to skedaddle to the station and make it across the platform and into the train, about 5 seconds before the doors slid closed.  After that, it is pretty much blank.  Thinking back to it now, I have a sensation of vacuum in my head, as though all my thoughts had been sucked out into that whispering void.  If you’d asked me a question, I could probably have given you a pretty logical-sounding Track One answer.  But the real me was lost, somewhere down along Track 2.   Fortunately for me, I didn’t have to answer journalists’ questions.  They were content with the pieces of paper.

Connor’s family, on the other hand, walked out of court into a battery of cameras: BBC; ITV; Channel 4; journalists asking for reactions to the Sloven ‘apology’ (which the Slove PR department extruded within minutes of the verdict being delivered; it went to the media, not to Connor’s family).  On this Friday evening, I felt that familiar blankness of relief and released mental tension; I imagined Dr. Ryan might well also be beyond ordered thought or identifiable feelings.  Late the following morning, she tweeted, ‘Still no coherent inquest thoughts’.

I watched the television segments about the inquest.  Channel 4 and ITV pitched it pretty near perfectly, although I was still shouting into the ether when Sloven’s Medical Director said she was sorry for ‘what happened to Connor’ (“NO! You should be ‘sorry for what WE DID to Connor and for how WE FAILED him by not providing proper care’, you wretched woman!”) and when she began huffing and eye-rolling, even as she strained to avoid being verbally critical of Connor’s mother, I nearly sent the remote through the screen.

But Friday’s 10pm BBC report by Michael Buchanan bothered me.  For me, it was jarring almost from the outset, starting by saying that Connor ‘died tragically’.  I was disappointed to hear a BBC reporter using a rhetorical flourish that could have been lifted straight from the Sloven Manual of Duplicitous PR.  Justice for LB has been calling out the ‘tragedy’ trope for eighteen months; and still is.  Regrettably, I found the ending of the piece even worse: after alluding to Justice for LB and the LB Bill, it finished by saying that Connor ‘would not have died in vain if the NHS learns lessons from his preventable, untimely death’.

That had me squawking at parrot pitch again.  As did the question on BBC Breakfast on Sunday about ‘what positive things have come out of your (Dr. Ryan’s) experience?’; the questioner was clearly angling for a triumph-from-tragedy story.

Listen up, and listen well, folks, because here is where I lay it on the line for you.

There ARE no upsides to losing a child.  The unnecessary death of a young man is not something that has positive aspects, spin it how you like.  Connor’s death WAS in vain.  His death was pointless and neglectful and preventable and appalling and couldn’t-care-less and just plain wrong in every respect.  Nothing, nothing, can redeem that.

He was sacrificed, not to some greater good (as if any good, however great, could merit such a sacrifice) but to organisational cheeseparing and the vanity of clinical and managerial staff.  In their egotism, certain of them refused, and still refuse, to acknowledge, or even admit the possibility, that they were in error of any kind.  Some, like the psychiatrist Valerie Murphy, mulishly insist that they made correct decisions at all times.  Others, like the Chief Executive Katrina Percy and Medical Director Lesley Stevens, make media-friendly, reputation-gilding, unforgivably tardy non-apologies or half-apologies; all of insulting inauthenticity.

But even if these monstrous egos could be deflated and brought to genuine remorse; even if every Health Trust and Local Authority in the country learned the lessons of LB’s death and put them faithfully and carefully into immediate practice; even if LB Bill were to be passed tomorrow and fully implemented the day after – Connor’s death would STILL be in vain.

Simply, it shouldn’t take the unnecessary death of a young man to prod organisations and people into doing the right thing.   It shouldn’t need that, and it certainly isn’t worth it.  Connor should still be here, living a good life the way he wanted to, and they should be doing the right thing anyway.

 

Common Trials: The Three-Legged Annual Review Race.

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!