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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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