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.

LB died this morning. In the bath. In the unit. He would be pleased the CID are involved.