Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Wednesday, 10 July 2013

LB

When I first read about the death of Sara’s son, LB (‘Laughing Boy’), last Thursday, I was lost for words.  I had been following Sara’s blog for over a year now, enjoying her delightful anecdotes about LB - his humour, his achievements, his uniqueness and also her clear love and pride in her son. Part of the reason the blog was so readable was because they are a family you wanted to know, to hang out with, to hear LB’s jokes and about their projects. Sara wrote about LB as an unlikely ethnographer, LB defying the expectations of the ‘deficit focused’ medical profession, his love of buses and lorries.  She wrote:
‘Some people suggest that LB (17) has various labels like autism, learning disabilities and Klinefelter syndrome. I just think he is one crazy dude who loves Eddie Stobart, drum and base and going to London.’
This blog – like Mark Neary’s – was the antithesis of the kinds of ‘autism as tragedy’ narratives the activist Jim Sinclair was targeting in his famous address to an Autism Conference in 1993 (‘Don’t Mourn for Us’).  It was a celebration.



And now, events have transformed it into an incredibly poignant obituary, an unbearable testament to how people like LB, and their families, get ground down in the care system. It is, truly, unbearable reading now – I have been moved to tears repeatedly this week as Sara documented the day he died, shifting into past tense, grief, anger, and the jargon filled processes that are clunking into action. I cannot imagine how this must feel for Sara and her family and my heart goes out to them.

I asked Sara if I could say a few words about LB here. Partly because it’s here, in this strange cyberspace where other lives touch ours without us ever physically meeting, that I ‘knew’ LB. I know other readers of Sara’s blog are also, similarly, distressed and angry about what has happened (see Mark’s blog, and Blogistan). LB’s death also raises so many questions which are related to the themes of this blog.

LB died in the bath, in a ‘unit’ that ‘cared’ for people with learning disabilities. LB had epilepsy, and Sara had already raised concerns that the unit may have overlooked earlier injuries that could be related to seizures. We don’t know any more than that about the immediate circumstances surrounding LB's death, except that the police are investigating. Doubtless other processes will kick into gear – probably an inquest, perhaps CQC will investigate, perhaps there will be a Serious Case Review. Although these investigations are important from a variety of perspectives, they can’t ease the family’s heartbreak; they can’t bring LB back.

Over the last year or so, Sara’s blog became sadder to read. Charting LB’s ‘transition’ from children's services into adult social care – of crap and inappropriate services, her fear of what the future held for him in 'crapshite' care services. About the ‘tyranny’ of a system that reduces people to piles of paperwork, ludicrous NHS referral mechanisms, being charged for services they hadn’t even received. Indecipherable and inappropriate communications ('I lightheartedly mentioned that LB said he didn’t want to meet her.“Well,” she said, bristling, “I am his future.”'). And, of course, 'panel'.  And meanwhile, no meaningful support forthcoming and LB becoming more frustrated and upset. It doesn’t take a genius to guess that trying to carve out a life, a future, whilst relying upon this shitty, ineffectual, bureaucracy for support contributed towards LB’s increasing signs of distress. And then detention under the Mental Health Act (s2) in the unit. And then detention under no safeguards at all thanks to awful rulings on what detention means for people like LB, even when they and their family clearly want them home – only with some appropriate support. And despite all the relevant services being aware that LB was incarcerated, that he wanted to leave, that LB’s family wanted him home, the appropriate support was still not forthcoming.

LB’s death has had me thinking again about the significance of reports like Mencap’s Death by Indifference, like the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Like the news at the weekend that the use of antipsychotic drugs may have led to the deaths of four men at a psychiatric hospital and yet that information was not disclosed to the inquest and CQC declined to investigate – preferring to rely on the assurances of management regarding their ‘clinical governance and assurance processes with regard to how natural-cause deaths are identified and investigated’. Some lives just seem to be valued less.

His death had me pondering a remark made by Margaret Flynn (author of the Winterbourne View Serious Case Review) to the House of Lords Committee on the Mental Capacity Act last week, about units like the kind LB was in:
I gather from conversations with relatives who have experience of assessment and treatment services elsewhere in the country that there are enormous concerns about the safety of their relatives when they are detained.
I wonder what LB was doing in precisely the kind of service that was supposed to become obsolete in the wake of Winterbourne View, because people were supposed to receive meaningful support in the community. The story of how LB ended up in the unit in the first place has chilling parallels to the stories of Winterbourne View patients, documented in Mencap’s Out of Sight report.

It is for the various official processes that have begun to establish the facts surrounding LB’s death, but I sincerely hope that one of the questions they are asking is why LB was in the unit in the first place, why wasn’t he receiving adequate support to live at home with his family where he – and they – wanted him to be. I hope they ask why a young man who had made plain he did not want to be in the unit, who was prevented from leaving it by way of locked doors, received no deprivation of liberty safeguards (in the form of the Mental Health Act 1983, given the ruling in GJ v The Foundation Trust).  Had LB been detained under s3 MHA, he would have been entitled to free after-care under s117 MHA.  Would have been entitled to advocacy.  A Tribunal could have asked probing questions about what he was doing, still locked in the unit, and what was being done to hasten his discharge.  Even the threat of the Tribunal may have focused minds.  I am sure those investigating LB's death will consider whether the Unit had taken seriously the family’s concerns about LB’s epilepsy, and that he was being appropriately monitored for seizures whilst he was in the bath. 

It just makes me so angry, this system, which isn’t there and doesn’t listen when people ask for help and then thunders in wresting people from their homes, lives and families when things hit crisis, claiming paternalism and benevolent intent. The space that people come to live in gets smaller and smaller and smaller until it is simply unsustainable. In the name of paternalism it places people in services like the unit LB ended up in because there was no appropriate alternative support forthcoming.  And then it can't even keep them safe.

If, after reading this, you are minded to read Sara's blog, make sure you read the stories that came first.  Stories like this one:
LB had a friend at school for a few years. Joe H. Joe H was outrageous in the best and worst senses of the word. He was a very funny guy. LB found him hilarious and talked a lot about shooting up in the playground and smoking weed with Joe H. He left school last year and wanted to give LB his phone number but rules forbade this. Instead I had to write in the school diary to ask Joe’s mum to give me the number.
Eventually LB came back with a post it note with Joe’s number. Hurrah! We dialled the number and handed the phone to LB. He sat in the living room, chuckling every few minutes. Ten minutes later, he was still sat there with the phone. “He he he”….. “He he he”….
Twenty minutes later. “Maybe you should hang up now?” I said, not sure if Joe was still on the phone (or had ever been).
“Ok.. Bye Joe”, said LB.
“That was nice, talking to your mate on the phone. What did you talk about?” “Afghanistan, Mum”, said LB, replacing the phone.

4 comments:

  1. Brilliant but heartbreaking piece Well done on such a well written heartfelt piece I have followed Sara's blog and also feel like I know LB We have a daughter in the care system and I am absolutely terrified for her future as an adult .Not to mention enraged that this could happen .
    I hope someone is made accountable and made to pay for this injustice .But sadly I think we'll be waiting ....

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  2. Thank you for posting this Lucy. I had only just been put in touch with Sara's blog and, obviously, beginning in such a place and at such a time was difficult. Reading back through her blog I could glimpse some of LB's life and vivid personality, and I was glad to have your guidance here: a more fitting way to meet him, I think. The whole thing sent shivers though me: though not learning disabled, my daughter has been in and out of the mental health care system repeatedly, and Sara's struggles with bureaucracy and lack of basic attention to the needs of the family were dismally familiar.

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  3. Lucy it is shameful and inhuman that it is other humans who think they are 'nice' and 'helpful', who are in truth cruel and indifferent, that will never be addressed.

    From directors of adult services to MP's they have their 'noses in the trough' for their careers and of continuity of their powerful personal positions, with no one to challenge or make them accountable. Along with them are the social workers (whom you seem to support- but few have integrity), managers, judiciary, lawyers who too have 'noses 'in the taxpayer income trough'.

    The whole system is riddled with wrong and corruption because it has been unaccountable to the public through its ability to not disclose cases. Serious case reviews for adult are not public yet, so the public is unaware of even these, let alone the numerous harms inflicted to the vulnerable through those working in the 'system'.

    The question that no one ever asks, because it has been assumed all this is disconnected with the Safeguarding duty, is who actually is safeguarding those who are harmed or die in the control of the people with power to affect lives negatively working in the system. The fact is safeguarding is laughable as established and led by local authorities. Just as criticisms of the police are now emerging- it is time the same happened to social work / services personnel and NHS staff. The issues are parallel.

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  4. Kirsty Keywood13 July 2013 at 07:36

    I have no academic/intelletual input here, but felt compelled to express my heartfelt sympathies to LB's family.The transition to adult services is a shocking experience and I wish for all the world it could be so much better.

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