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One of the great things about the Justice for LB campaign is that it is collective.  As the parent of a child with additional needs, one often feels isolated – because one IS.  If your dude isn’t able to go to certain places because of their differences – whether that’s because the places are physically inaccessible to them, or because their idiosyncrasies are palpably unwelcome – then you don’t go there, either.  If, whenever you are out, your attention is at all times somewhere between 80% and 100% focussed on your dude’s needs – because it has to be – then your own chances for interactions are necessarily limited.  And if your caring responsibilities are so onerous that when you get respite, all you can sensibly do with it is sleep, then respite is not a de-isolating provision.

The most scarily isolating thing of all, though, is the recognition of yourself as one small individual having to deal with large, mostly faceless, organisations.  Even if you are articulate, experienced, educated, it is a difficult place to be, because you are so alone and the power imbalance is so great.  A big, wealthy organisation can easily oppress an individual without even trying, unless it makes conscious and conscientious efforts not to.

I recently had to threaten Grenouille’s local authority with Judicial Review.  I have spent enough time ferretting around in law libraries and analogous corners of the interweb, to know when I have somebody bang to rights about what they are up to, and in this case, I most definitely did have.  So I could write to the Director of the relevant service and say, ‘Here is what has happened.  Here is what should have happened.  Here are the legislation and case-law that back my assertion that you have failed in a statutory duty.  This is the deadline I am giving you to right the matter, or I shall place it before the High Court’.

I knew the authority was unlikely to want to go to Judicial Review, since it would be on a losing wicket before it even hit the pitch.  However, if it did turn bolshie, I would be in for a minimum of five grand in fees.  That would be all my personal savings gone, whereas it would hardly make a perceptible dent in a big organisation’s budget.  So until I got the abjectly-grovelling apology from the Director, about a week later, I was stressed to hell: pulse racing, breath catching, head pounding, stomach churning, every time I thought about it.  Which was, of course, every other minute.  Good job I wasn’t due my carer’s health check that week, or I might just have bust the blood-pressure reader.

People like me don’t go in for organisation-baiting as a form of fun recreation.  We do it out of miserable necessity; not for amusement, but because we have to do it or our dudes get done down.

This is where Dr. Sara Ryan, Connor Sparrowhawk’s mother, started from: a lone voice howling from an impenetrable wilderness of grief and outrage, because her dude had been definitively done down.  Those who had been following her boy’s life knew they couldn’t get anywhere close to feeling with her, but they wanted to help, and as far as they could, they surrounded the family.  People who had known LB in life turned up by the busload for his funeral.  Dozens of parents and carers posted on Sara’s blog.  Offers of help poured in.  The Assistant Editor of the local paper commented the day after Connor died: “There are obvious issues here so if you like to speak to us at the Oxford Mail about these, please contact me on …” 

Meanwhile, the organisation Dr. Ryan was facing – Southern Health and Social Care Trust – seemed to epitomise all the undesirable aspects of a large organisation: it steamrollered, ignored, obfuscated.  It failed to check the well-being of other residents in the Unit where Connor drowned; it failed to check that the Unit was a safe place for those remaining residents (it absolutely wasn’t).  Connor’s family tried playing strictly by the rules, keeping quiet about details of the bewildering processes they were having to negotiate.  

Four months on, the dam burst when the Trust tried to manipulate the rules of the internal investigation to exclude Connor’s family’s advocate.  The people around Connor’s family, the undefined, voluntary ‘Team LB’ went spontaneously to work and within a couple of days, the advocate was reinstated.  Dr. Ryan even praised the Trust for reconsidering.  But thereafter, what emerged from and about the Trust was relentless shiteness – dung-pats of awfulness fuelling the concern generated by LB’s death.  Eventually, the concerns coalesced into the Justice for LB and 107 days campaigns.

Over the same period, it trickled out that the Trust had pulled the same procedural trick regarding internal investigations and advocates on another family whose child had died; that concerns about the unit where Connor died had been dragging on since 2011; that the documents it was putting into the public domain gave a Trust-favourable spin on reported events; that it was leaning on people, apparently in expectation of silencing critical voices; that it maintained that continuing criticism was unjustified because it was planning to improve things (sometime).

The trouble about denying that you’ve been caught with your drawers down, though, is that when you try to make a move with them still round your ankles, you trip yourself up and destroy your ability to arse-cover.  Sloven Health fell flat on its collective face into a midden when the CQC report into Slade House was published in November 2013, and floundered in even deeper trying to block publication of the Veritas independent report in early 2014.  Having squandered any goodwill that Connor’s family might have been able to extend to it, it carried on casting itself as the victim, as has been made apparent from documents that have recently emerged from FOI (Freedom of Information) requisitions.

“Sadly, since the publication of the independent report the Trust has been subject to trolling on Twitter, a number of staff have been directly targeted and have felt intimidated by the Twitter traffic, we are aware of at least one staff member’s account having been hacked and a bogus Trust Twitter account set up.  …..  We should be clear that there is absolutely no evidence that Sara Ryan is personally responsible for this trolling, hacking or intimidation but there are clearly some people who wish to use this case inappropriately.”

That use of Dr. Ryan’s name in that last paragraph is a textbook example of what I have heard referred to as the “When did you stop beating your wife?” manoeuvre.  No evidence is adduced that trolling, hacking, or intimidation have even taken place, but Dr. Ryan’s name is irrevocably – and completely unjustifiably – linked with all these nefarious activities.  And then Trust personnel seem surprised that Dr. Ryan doesn’t trust them as far as she could throw Slade House, and doesn’t want to ‘engage’ with them.

Other NHS organisations take a different approach to engagement.  I don’t know if this blogger’s Trust has a stated position on anti-oppressive practice, but its Twitter policy as outlined in the post suggests that even if it does not, it is operating in accordance with at least some of the principles of anti-oppressive practice.

The behaviour of some other organisations leads one to suspect that not only have they failed to incorporate anti-oppressive principles into their practice, but that if anti-oppressive practice has ever come up on their radar, they’ve gone, “Sod that for a game of soldiers, we’ll do the diametrically opposed thing.”

It’s not just Dr. Ryan. Look at the Neary family’s battle with their local authority and neighbourhood ATU. Go into any gathering of parents of children with Statements or EHCPs, and hear woeful tales of the foot-dragging, smoke-screening and downright lies, ahem, inaccuracies to which they have been treated.  Listen to tales from patients who, having been admitted for specific acute conditions, have had their chronic co-morbidities ignored or mismanaged so that they come out of hospital with their general health in a significantly worse state than it was when they went in.

The only admissible response from Sloven to Connor Sparrowhawk’s family would have been along the lines of,

“We have messed up, big-time.  We are not quite sure how we did it, but we acknowledge that we must have got things wrong at every level for such an appalling end-point to have been reached.  We realise that no apology can be sufficient, but nevertheless we are sorry.  We will find out what happened, we will take action to prevent it happening again, and we will make our findings and our actions public.
This is how we will go about finding out…..  This is what we will do in the meantime to keep the other people in the same unit and similar units safe….  We will keep you informed as we go along of what we are doing, by…..  If you would prefer us to communicate differently, please tell us and we will do as you ask.  Is there anything you think we should be doing differently, or anything else we haven’t mentioned that you think we should be doing right now?”

How different Sloven’s area of the Twittersphere would have looked, had they responded and acted along those lines.  It’s worth considering that if STATT, Sloven, the commissioners and Oxfordshire Social Services had been practising anti-oppressively, Connor might never have died:

“From the point of view of service users, practitioners are often in positions of considerable power, particularly where decisions are being made about the delivery of services and around intervention in people’s lives. To practise empowerment, workers will need to focus on working with service users to engage them in the problem-solving process.

“Empowerment is linked with anti-oppressive practice, in that the worker can work with service users to enable them to overcome barriers to solving problems – whether located in the attitudes and practices of professionals and social institutions (for example, health and education authorities) or in the beliefs of the service user. The worker’s knowledge of service provision and the law can be critical in empowering service users.

“Anti-oppressive practice is ‘about a process of change which leads (service users) from feeling powerless to powerful’ (Dalrymple and Burke, 1995).”

Instead, Connor was warehoused, disempowered, manipulated and ignored, and his family (who, as Connor’s carers, were also service users entitled to support) have been marginalised, discounted, excluded and lied to.

I’m proud to be one of the people trying to bring a few truths home to Sloven Health and the other responsible organisations, in particular Oxfordshire Clinical Commissioning Group and the Safeguarding Board.  I stand by my deconstructions of their various pronouncements and actions.  They are welcome to try to justify their speech and acts, although in a spirit of kindness, I will first refer them to my paragraph about descending drawers above.

So, who’s the troll? I spy ogres….