Days are passing. Slowly. Grindingly slowly. Helped by family, friends, colleagues. Helped by cards that continue to arrive, flowers, messages of support, daily dog walking by lovely tinies, E and M (despite comedic ‘hide-under-the-sofa’ or ‘run-home-at-any-opportunity’ Bess actions). The shared experiences of similar, or related, (harrowing) happenings both ongoing, or historical. Outrage upon outrage on social media.

And the funny stories (LB was seriously, seriously funny) keep coming. They all make me chuckle;

On another school trip to an outdoor pursuit centre, we were all sat on the minibus early in the morning, moaning how tired we all were. LB sat at the back being really cool, pipes up in a silent moment: ‘ I don’t think I’ve been this tired since the last time I went bed’.

The dude was a refreshing antidote to tired, taken for granted, stale and often pointless ways of being and doing. What an oversight (mistake, loss, tragedy?) to channel him (as so many young people like him) down a path characterised by deficit, disregard and (non) care/health jargon. A complete failure to recognise and value what he could contribute to society. The loss we feel as a family, underpinned by the collective sense of outrage by others, underlines how wrong this all was.

I received the set of social care notes today. Another version of events. One in which I’m a right old problematic mum. There is more recorded about my interactions with the various staff members than LB’s care (or complete lack of). My rage, frustration and distress jotted down clinically with no sniff of engagement or reflection. That’s another dimension to the lack of care documented in this blog. Where is the basic humanity? Where is the thinking, feeling health or social care member reflecting on what I was actually saying? Imagining what the experience must be like? Thinking about us as a family rather than LB as an atomised being? It’s as if the space for thought or thinking (and common sense) is obliterated by the weight of engaging with (non) care plans, risk assessments and nonsense processes. And staff, at whatever level, sign up to this model. The bunch of bloody sheep model.

The trip to London today. Sad, odd, uncomfortable and surreal. We were tired and anxious.

I kind of wanted to tell everyone around us what we were doing. What had happened. On the platform at Haddenham Parkway. On the tube. But that would be seriously weird. It’s as though we’re looking at the everyday through a different lens, wondering at the people lucky enough to be going about their daily life, brightly clothed, heading places, doing stuff. Most people seemed to be rushing somewhere. Well, apart from those people who were struggling. Or dealing with life in different ways.

Bit of a mix up on the address (I got the office number wrong in about three different ways which created a strenuous, stressy, hot hike) before we arrived late at the oasis that is our solicitor. I’m going to call her C here. She listened, she thought, she was sensible, kind, informed and she acted. She was realistic. This was comforting.

The journey home was, again, odd and disjointed. And then it was a crawl into bed for a deep kip. And waking to the constant ache; if only this wasn’t happening.

Sadness has reached new depths (how is that possible?) with the arrival of the unit records through a superhuman effort from my mum, and eventual delivery of these records via several emails from the NHS trust regional director and her PA. The back story is now available. And what a distressing and harrowing tale it is.

These records provide the most devastating account of LB’s time at the unit. I haven’t opened all the emails. The ones I’ve read detail LB’s confusion at being at the unit, his consistent expectation (hope?) that his mum would come and get him. His desire to come home. The hours and hours and hours spent watching DVDs.

Nonsense care plans/risk assessments. Yawning pointlessness. Shifting choices, non action, destruction.  They even gave him a maths test with equations. The dude couldn’t count to 10. What a fucking waste of everything.

I should have gone and got him.

Today the Royal College of Psychiatrists published a report on the role of specialist mental health in-patient services for learning disabled people. Another outcome of Winterbourne View. Yesterday, Alicia Woods wrote a steaming piece about what happened to LB. I have to say, reading the former, I hear ‘yadayadayadayayawnyyada’. How we can still be discussing what are straightforward, obvious, sensible things is astonishing. But even more ‘talk to the hand’ inducing is that they are recommendations. Recommendations are about should. Not must. When is someone who has the power to make a difference, going to stand up and say ‘This has got to stop. Things must change. This, this and this must be done’? Until there is some proper accountability, and health/social care professionals/institutions are actually held to task for their actions (or non-actions), nothing will change.

As for the Community Care piece? Thank you Alicia Woods. ‘Rotten system..’ ‘Do we know what families need?”Does anything special happen in a treatment and assessment centre that can’t happen at home?’ ‘Stupid blanket rules‘… She totally nails it. The outcome of LB’s 107 days at the unit (which incidentally was a ‘short term unit’) was, having removed everything we had in place for him and letting him watch DVDs all day, they were trying to re-organise the same activities and re-introduce emptying the dishwasher. And then they were so overly focused on silliness, they let him die in the bath. Heart/breathtaking in its incredible, awful shiteness.

Tomorrow Rich and I are going to London to meet the solicitor. This the last thing we want to do. Walking past the pickle shelf in the supermarket nearly finished me off on Sunday. London was LB’s haunt. He always wanted to be a Londoner. The day will be teeming with memories and reminders. We’re going from an out of Oxford station to try and reduce these, although this will be the route a group of us used to go to a Mencap do at the House of Common’s ten years ago for the launch of the ‘Breaking Point’ campaign. LB caused hysterics then (both funny and less so) by loudly announcing that terrorists were going to blow up Big Ben. A few years later, on a sunny morning, he followed this up on the Oxford Tube bus to London where he loudly and officiously asked “Are there any terrorists on board?”

But we have to try and get some accountability for what’s happened. Both for our own peace of mind as if, but also to try and make sure some other poor dude doesn’t have a similar experience. This afternoon, I’ve been looting our filing system (any room in the house) to find relevant paperwork to add to the set put together by our Clipboard Campaign Team. (And yes, that’s the Clipboard Campaign Team, NOT the CCT). Reading through the reports/letters, I’m reminded of a summer guide camp in Essex a zillion years ago when we were sent off to the nearby village to buy our own food to cook. We bought some chicken, but when we got it out of the carrier bag in the tent hours later, sleepy, fat blue bottles crawled out, keeled over and the meat was full of maggots. Those old bluebottles kept appearing this afternoon. The system that failed LB is rotten. And wishy washy ‘shoulds’ ain’t going to change that.

The Relatives Room. John Radcliffe Hospital. July 4th, 11.18am. The saddest place in the world.

LB’s bus ticket collection. 2006-13.

Mother’s Day stuff.

The London Road, early July 16th. The day of the do.

New evenings. Outside.

A carpet of cards.

I’ve been raging for the last few hours, after reading research evidence about epilepsy and drownings, and reviewing some of the paperwork relating to the last few months. It’s time to refocus on LB and the good stuff. We asked people to jot down memories of him at the ‘after’ do. Here are some highlights;

On Rosie’s 14th birthday; LB swearing under his breath.
LB’s dad: “LB, stop swearing!”
A few seconds of silence pass.
LB continuing under his breath “Wanker”.

I remember Friday nights, pouring with rain (always) and LB going to youth club with ‘those disableds’. Never fails to make me laugh out loud. Even now. So privileged to have been a very small part of a very special dude’s life.

LB. What a fanatastic dude. Not many are able to bring light and laughter to every situation, but LB succeeded on a daily basis. The brilliant stories from LB’s coaches to drum and base are endless, and we will never forget the guy. Sleep well, LB.

On a family holiday in France. LB jumped into the deep end of the pool. I said to Sara “I didn’t know LB could swim.” “He can’t”, she replied.

My beautiful, beautiful LB. You came into school and said “L, I got arrested last night!” I said “Oh no, LB, what on earth have you done?” “I got caught behind the back of the youth club smoking marijuana.” “Oh dear, LB”. I love you. x

LB said the nicest thing any child has ever said to me because it was so spontaneous. The conversation went like this: “LB will you pick up those beanbags.” LB moaned and refused. I was irritable and hot (not that I usually was). “LB, I am the teacher in charge whether you like it or not”. A long pause. “I like it.”

We had a new dinner system at school. Wristbands for meat or veg (no menus). I said to LB “do you want meat or veg option for lunch?” “What will I eat?”, asked LB. “I don’t know. There is no menu.Just a band.” “This is bollocks, isn’t it really?” I couldn’t agree more.

“Newmarket is famous for horses and cucumbers”.

Oh LB, you were such a special person to me, my friend and above all, my garage mate. And do you know what, I will never be able to put that bloody Nissan engine back together. I have so many memories of you. Love you loads.

“Who do you like best LB, Stan or Bess?” “Stan”. “Stan or Richard?” “Stan”. “Stan or John?” “John”. At least that’s how John remembers it. LB will always be at the top of our list. I feel so lucky to have known him. xx

So privileged to have known such a lovely young man. I knew LB when he would always go and do the litter picking at school. He was so responsible and would come back at the specified time agreed. He taught me how responsible these secondary school children could be, with gentle nurturing and direction from the staff. He would also always be checking at the classroom door when we were tube-feeding pupils. He had his beady eye on us. Fond memories. Rest easy LB, you were great.

Fond memories of LB. We hope the buses where you are, are running on time. xxx

I kind of jokingly tweeted that I’d come up with a set of ‘grief tips’ a few days (week/weeks?) ago. I haven’t got any yet. Antony and the Johnsons, who sat so well in the very early days, soon became a bit irritating. I’ve been randomly selecting music since, none of which I want to listen to. The only thing I have noticed, is the importance of space/s. Sam, ‘little sis’, alerted me to the dangers of being in a car alone early on. Yep. Best avoided. An intense space in which the full horror/distress/misery/nightmare dominates.

We’ve been lucky enough not to have had a lot of time alone so far. With other people around I can forget, or avoid, temporarily. And being outside is marginally better for me. Indoors, pacing is the thing. This new space, of non work, non anything, is so empty, it screams to me to do something. The trouble is, I’m too tired to really do anything.  I’ve been dog tired but unable to sleep. Yesterday afternoon I gave the settee a whirl.  I was asleep instantly, and slept for a good hour or so. But then it’s waking, thinking, remembering, screaming (internally) and crying.

At the moment, I’m really trying not to remember LB though he keeps crashing into my thoughts/movements (at home, out and about, visiting mates) because of dense layers of memories, both expected and unexpected. Rich and I had breakfast in a local cafe yesterday morning. Baby steps with pain. An undercover police operation was happening at the end of our road, and in the London Road. The road that now incorporates LB’s love of London trips, buses, discussions with a funeral director, and his do procession. The intense interest LB would have gained from these activities is physically winding. We all chuckle about how he would have made sense of the past couple of weeks. How, in the couple of minutes silence during the do, he would have repeatedly asked ‘Is he dead Mum?’

‘Pat Butcher’ walked past us, as we sat outside the cafe. And smiled. Yes. Really. Pat Cabs Pat. In our peculiar suburb which I’ve always loved for its diversity. And local characters. A space now framed with the continual scream – ‘HE WAS LEFT ALONE TO DIE IN THE BATH… IN HOSPITAL’. What do we do with this? Where do we go with it? Where will we ever go with it? I don’t know. But we’re off to London to meet the solicitor on Wednesday. New spaces interacting with familiar ones. Some action to fill the emptiness.

So, the government has refused to set up a review board to investigate the 1,200 premature deaths of learning disabled people a year. Instead, a set of recommendations have been made. In the House of Commons, a week after LB died, Norman Lamb said a priority area for further progress was ‘giving greater voice and power to people with learning disabilities and their local communities to develop services for everyone, including those in vulnerable or marginalised groups’. What a load of old bollocks.

As I’ve probably banged on about before, I can’t stand this ‘give people voice’ crap. It’s so patronising and offensive it makes my ears weep. People have voices (or other ways of communicating). They don’t need to be given them. The problems here don’t lie with learning disabled people not having ‘voices’. They lie with people not listening. Not understanding. And not caring. The suggested priority of increasing personal budgets to enable people to buy their own care is as good as useless if effective care is not available.

None of the recommendations set out in the government’s response to the confidential enquiry would have prevented LB’s death. He died because he was treated without care or thought. Both by individuals and a system in which non care, underpinned by a bureaucratic monster of (non) care plans and tick boxes, is the default position for learning disabled people. I don’t suppose that this jumble of words/jargon organised into a set of ‘recommendations’ will translate into any real change in the lives of learning disabled people. Guidelines or recommendations are pretty meaningless. The pathologist doing LB’s autopsy failed to followed the Royal College of Pathologists’ guidelines for patients with epilepsy. When I challenged this (yes, the space of grief and grieving in the case of the unexpected death of a young, learning disabled person has a peculiarly horrific landscape), I was told that these were ‘just guidelines’ which didn’t need to be followed. Eh? Guidelines that state “It is essential that…”?

I don’t think people will really start to care properly until they see learning disabled people as full and valued members of society. At a micro level, LB was valued. There has been an enormous response to his death which has been a source of some comfort. People seem genuinely upset and angered by what happened to him. A happening in which he had no ‘choice’ or ‘voice’, or other crap like that. This upset and anger has come about because people got to know him as a person, as a funny young man who had a refreshing approach to life. As one person wrote to me;

 Kids like LB don’t feature in Hollywood movies or magazines. And unfortunately most of us never have the opportunity to get to know them. When I was a child, I remember being afraid of my neighbour’s son, because he was different. He’d rock back and forth and mumble to himself. I was scared of being near him. I was uncomfortable, I didn’t know what to do. I tried my best to avoid him. Humans are afraid of what we don’t know. And fear leads to cold and inhumane actions. We distance ourselves. We worry how we might be perceived by others around us if we engage with those who are different. Now, as an adult I look back and wish I could explain to my younger self. I feel far more comfortable around people who are ‘different’, I no longer feel afraid. LB’s wonderful life and your story of it, had helped me along that path.  I hope it will do so for many other people. […] I promise that I will speak to people like LB when I meet them on the bus. I promise I won’t shy away, feel afraid or embarrassed. I promise I won’t give a toss what others might think. 

People said for years I should write about LB; he was such a hilarious dude. I started this blog partly as a way of recording these funny stories. I didn’t anticipate it would be widely read. Or that it would take such a terrible, terrible direction. But writing is a large part of my job anyway. Not every dude like LB will have someone to write their story (if they can’t do it themselves). We need to find other ways of making people care. Of accepting and celebrating learning disabled people as fully human. And then maybe the government wouldn’t baulk at the ‘cost’ of setting up a review board to investigate how and why these deaths are occurring. But then, of course, they probably wouldn’t happen with such regularity.

Well, as far as these kind of do’s go, it was bloody brilliant. It was a gig I dreaded with every bit of my being. I felt such a strange sickie/fainty sensation in the morning, visiting LB for the last time, I couldn’t see how I could get through the day. I did not want it to happen.

But it was a good day. A day of sunshine, celebration and buses. The journey to the cemetery started from outside our house. We wanted LB to come home one last time, as he’d consistently wanted.

He was in a shiny, red London bus coffin, and we followed behind the hearse in a beautiful old Routemaster bus, customised with the name of his planned bus company. The funeral director walked the hearse from our house, part way along the London Road. A road LB loved for the volume of bus traffic. It was where he filmed his youtube bus film.

The tiny woman with the chair was sitting up near the roundabout. She leaned forward when she saw LB and waved at him. Unbelievable. And strangely magical.

There were so many people at the cemetery. From different times and spaces, wearing  bright clothes. Two of Charlie’s Angels, Sue and Tina, were pallbearers. Dressed in red and black, they helped carry LB to a beautiful spot in the woodland section of the cemetery. Delivering to the very end. The service was brief; some words about love and life by Ann, an interfaith minister, a bus poem by Izzy, who looked after LB when he was younger, and thoughts about LB by Rich. Between them, they nailed the dude LB was.

Busker John, who was going to play the guitar, broke down on the M40 but Lea stepped in. He sat down under a tree next to the grave and played a rousing version of ‘Here comes the sun’. We scattered bus tickets that the kids and their friends sourced from LB’s room a few days ago. A bucket full, dating back to 2006, and rose petals.

Then it was back on the bus to a soundtrack of ‘Build me up buttercup’ and ‘Summer Breeze’. Laughter and chat. At the Cowley Sports and Social Club there were even more people. The kids played football outside while people shared funny stories about LB, ate sandwiches and cake, and drank ginger beer. One old friend said; “The funny thing is, if anyone who hadn’t met LB asks me what he was like, I can’t describe him. He wasn’t like anyone or anything. He was just LB. That’s what he was like.”

Yep. That’s exactly what he was like. And the day was just right for him. Quirky, funny, full of love and buses.

This perfect do allowed us a day of sunshine and celebration at a time of unspeakable horror. A remarkable organisational achievement by some mates who picked up a clipboard and ran with it*.  Fran, Becca, Clare, Gail and Lorna (aided by partners and children), sourced and booked the venue and the bus, organised bus badges, arranged technical detail, decorated the room, sorted timings to/from the cemetery, laid on a great spread and cleared up afterwards. No words really. I don’t know how they did so much in such a short space of time. But they did. 

Apparently everyone they approached bent over backwards to help. ThisBus.Com provided the customised bus at short notice and (and a very kind and sensitive driver/conductor on the day). The Oxford Bus Company provided materials to decorate the venue. Jenny, at the Sports/Social Club did her utmost to make everything happen before and on the day. Leopard Press did an excellent job on the order of service, with the help of Tracy and Mike. Beth (and Susan) sorted the portable sound system at the graveside. SR Childs, the funeral directors, went over and above what was expected of them, organising an exceptional coffin, togging the pallbearers out in red ties, even shooting off in the car to try and get Busker John to the gig on time. He missed it but made up for it with a candlelit request session in the garden, late into the evening. 

*They are now turning their attention to campaigning, and if anyone can effect change in the way in which learning disabled children/adults are treated, I’d lay my money on a bunch of (raging) mothers of disabled children.