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.