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.

I sat out in the garden this morning for a few hours. Listening to music and watching the planes go overhead. It was an ok type of activity in the circumstances, till I cried so much I could no longer see the sky.

It’s a tough gig trying to remember our cheerful and hilarious dude right now. The unit time keeps seeping in and swamping any thoughts with horror, rage and questions.

One song I listened to was ‘Wrecking’ by Laura Veirs. A few years ago some Vancouver film students used it as a backing track for a short black and white film. The kids never liked watching it. They said it was way too sad. I always thought it reflected what life is like for dudes like LB.

Where to start? How to make any sense of what’s happened this past week? I don’t know really.

Kicking off with the worst news experience happening imaginable, we’ve been knocked into a space that most (a lot of?) people/kids/families tend not to enter. LB, who was loved so deeply, experienced a consistently careless disregard of his life by others and ended up dying, aged 18. A complete and comprehensive health and social care fail. I don’t care what crapshite defence/excuses are presented in the destructive and damaging processes we have yet to face. It should not have happened.

The shite continues of course. As well as having to think about LB, his siblings, the funeral arrangements, ongoing CID investigations and an NHS internal investigation (don’t laugh), we’ve been forced to read guidelines around post-mortems involving epilepsy, chase up missed procedures and appoint a solicitor. Unimaginable horror. Confronting the gap between guidelines and practice. Phone conversations about missing brain tissue samples while journalists hover on the doorstep or lurk online.

Welcome to the world of death by indifference.

There is such a chasm between the raw, devastating grief visibly experienced by family, and those close to LB, and the careless, callousness of many ‘professionals’ we’ve come into contact with over the past few months/years. Family was really a dirty word once LB entered the unit in March. We had to ring up and ask his permission to visit him on a daily basis for over a 100 days.  He never once said no. This is so heartbreaking, I want to get the relevant people by the scruff of the neck and say “What were you doing? Why would/how could you you do this?” LB lived happily with us for 18 years before ending up in state care because there was no other care. “What were you trying to achieve by carelessly labelling us as the problem?”

I want to know how the system, and the people operating within it, allowed and supported LB’s death. And our heartbreak.

I know he isn’t alone in experiencing such indifference. There is so much evidence about the mistreatment of learning disabled people by health and social care it’s appalling. (A mistreatment supported by the non-action of the government*). But right now, he is.  For us.

*And don’t get me started on the cheap, nonsensical and patronising notion that “giving greater voice” to learning disabled people will, in any way, shape or form, reduce these horrific statistics.

Time is passing slowly. It feels as though we’ve been living this half life forever now. No one has had a bath since last Wednesday. I’m not sure I ever will. We’re wandering around bumping into memories present in every inch of our house. The pain is indescribable. But our grief is disrupted by officialdom.

LB is now badged a SIRI. Jargon haunts him even after his death. Why the fucking crapshite do the NHS/Social Services use so much jargon???

A SIRI is a Serious Incident Requiring Investigation which may generate media interest. Eh? What about the poor buggars whose ‘serious incidents’ aren’t likely to generate media attention? I don’t understand what difference it should make to the NHS if the ‘serious incident’ may generate media attention or not. Does it mean they pay extra attention to their (internal) investigation? Is there less (or more) likely to be a cover up? Is a head honcho dashing to take their suit to the dry cleaners, ready to make some bland, meaningless rote statement on some steps somewhere? Is the Trust busily smartening up the outside of the unit in case it gets papped?

Well they are right about this terrible, devastating, happening generating interest. It has generated shock, horror, sadness and rage among so many people we’re overwhelmed. This collective feeling has, in turn, generated offers of support and hardcore advice and information. LB would be delighted that the legal team is kicking in at last.

Just not about filling the dishwasher, sadly.

Four days. Seems like a lifetime. Or a life sentence really. The horror and disbelief kind of recedes, as family and friends sit around, drinking cups of tea, recalling the funniest, funniest of stories about LB. How he proudly announced last summer “I have a girlfriend for every occasion; camping and funerals”. Or in answer to Will’s recent question about what he did in the unit overnight, said cheerfully “not much.. a bit of wanking.”

That there seem to be no end of stories underlines how remarkable he was, and how his way of being and doing cut through the bullshit of everyday life.

The grief returns pretty sharpish though. Partly fuelled by the many reminders around our house (a major downside to cluttering). Photos, drawings, odd toys, Mother’s Day gifts, school reports, odd socks, years of ‘pupil of the week’ certificates stuck to the side of the fridge. And that’s without going in his bedroom. My mum and sisters collected his things from the unit on Friday morning. A terrible, terrible job. It broke my heart to see his well worn copy of the Yellow Pages at the top of one of the boxes they brought back. He’d been reading this less than a week ago. Septic tanks and heavy haulage.

We’re devastated. Completely devastated.

And enraged. Enraged he died in the bath in hospital. How could this happen? We never stopped listening and checking on him in the bath at home. How can you possibly find a young man with epilepsy at a learning disability/mental health acute hospital dead in the bath?

And, almost worse, how could we, as a family, seriously talk about how we hoped he’d had a massive heart attack? The alternative so painful, it’s unimaginable. But of course we know it isn’t really.  A recent Mencap report (a few years after the ‘Death by Indifference’ report) found that there are 1200 avoidable deaths of learning disabled people a year in the NHS.

What sort of fucking care is ‘care’ for learning disabled people?

And then there is another layer of rage/despair. The wheels of the ‘official investigation’ by the NHS Foundation Trust means that he – a young man who never got to kiss a girl, go out on his own or do a tour of the Oxford Bus Company – will continue to be discussed/dismissed/pored over and minuted in jargon filled, appalling, process driven documents. Bureaucracy obliterating humanity in a mechanistic, always meaningless, way.

Why is it that the NHS/social services never voluntarily stick their hand up and say “We got this wrong. We are so, so sorry about what’s happened. But boy, we are seriously going to make sure it never happens again. And we’ll let you know/involve you in doing this”.

Part of me wants to say leave the dude alone now. Stop stamping over our beautiful boy who was loving, generous, without guile and enjoyed a cracking set of interests. He never had a chance with the web of under-funded, under-valued, non-support he experienced most of his life.

Then I think he deserved so much better. As do his peers, who were at the school Summer Ball on Friday night while he was in the mortuary. Things have to change.

Went to the park across the road tonight with Tom, Rich and Bess. An older man was walking slowly across the grass with a middle aged man who was walking hesitantly, making unusual hand movements. Bess ran over to them and we started chatting.

The older man seemed delighted to talk. He chatted about Bess, Tom and football, and growing up in St Clements.

“And is this this your son?” I asked, smiling at the dude who was standing a little way away, grinning at the ground.

“Yes,” he replied. “He’s very shy.”

“We had a son who was a bit shy”, I said.

I made sounds at the John Radcliffe hospital yesterday I never expected to make. Or even knew I could make. Sounds of keening, howling, inconsolable, incomprehensible grief, sorrow, despair and darkness.

Our beautiful, hilarious, exceptional dude was found unconscious in the bath in the unit before a planned trip to the Oxford Bus Company. The psychiatrist from the unit who called me at work around 10am to say that LB had been taken to hospital, gave no steer he was pretty much dead. I asked her (as an anxiety induced after thought) if he was conscious when he left the unit in the ambulance. She said they’d cleared his airway but he hadn’t regained consciousness. She made no suggestion I should urgently go to the hospital or that I should go with someone. It was a care less call. Much like the ‘care’ he’d always experienced outside home and school.

I arrived at the hospital twenty or so minutes later, with a work colleague who (so, so kindly) insisted on coming with me. I was immediately faced with a LB has a ‘dead heart only kept alive by a ventilator’ story. This news generated my, to that point, unknown sounds.

I hugged him while he died.

Unspeakable horror.

Agonising pain.

The combination of work mate, A&E staff and my mate Mary, who works there, was outstanding as we gathered the kids and sat in the ‘relatives’ room. We will forever be grateful for their care and sensitive attention.

We are now in a space I can’t describe.

Tom hopes LB is hanging out with the old comedians he loved watching. Having a bit of banter. I can’t move beyond wondering how a hospital unit, with only four or five patients, who made such a fucking fuss about asking LB’s permission for us to visit on a daily basis, could let him die in the bath.