Things ain’t getting any easier. They are changing though. Largely through the support and actions of family and friends (and wider). This week there has been a collective effort to sort out the chaos we live in (serious hoarding tendencies) and transform/create space. Space for us to try and recover.

This has involved packing up LB’s stuff. A task I couldn’t go near.

The kids, under the watchful eye of Tracy P* (“…we packed absolutely everything, even what looked like the chewed off corners of cereal boxes”) set too, decanting LB’s life into a mountain of boxes and boxes now stacked up around me, downstairs.

Heartbreaking.

Sue and Tina (Charlie’s Angels) pitched up among the chaos. We laughed about some memories. Particularly LB’s delight in sending a message in a bottle to the mermaids. Off the bridge at Marston during a nifty detour on the school bus. And the answers he received from the mermaids on postcards sent from various holiday destinations. He had some magical experiences, that dude, which he embraced in his straightforward, ‘does what it says on the tin’ manner. A cheeky grin and a chuckle.

We again shared disbelief/rage about what had happened. And how it could happen. As Sue said, a constant loop going through her mind. Impossible to make any sense of.

They left to go to the cemetery and the clear up continued.

After my smell descent earlier this week and the physical removal of LB’s stuff from what was his and Owen’s room, for so many years, I’m struck by a silence, as well as the continuing raw pain.  An enormous silence. I don’t know if this is because LB never stopped talking, either to himself or through repeated (bus and lorry related) questioning. Or whether it’s a more symbolic silence. It’s as if someone has switched off a background channel somewhere. Odd and unsettling.

But we now have new (and clean) spaces in which to be. I have an armchair in the bay window in what was LB’s room with a view of the London Road and the buses. And a large empty chest ready to store the special things/memories when we are able to sort through the stuff. Around the ring road, at the cemetery, a sparkling Eddie Stobart baseball cap has appeared on LB’s grave. Under the trees, in the sunshine.

No words from me today. Here is Rich’s speech from the do:

Now, before I go too far into this I should make a quick observation – if LB could speak to us right now he would have already said ‘shut up and sit down Richie’ as he did on many family or other occasions when I thought I should say something – so in keeping with the spirit of his wishes I shall not speak for long.

As many of you know it wasn’t the most conventional of family structures – taking the form of a reconstituted, blended, multi-locational one or whatever it might be called – but it worked (well most of the time; you try going through UK border control with seven people pretty much all of whom have a different surname on their passport) and LB shared his love, his sense of humour and fun, with all of his brothers and his sister, his mum and dad as well as his grand-parents – along with a number of others whose specific family designation was less clear but just as important – I spent a good ten years being known as the Amazing Geoffrey – not sure why but it worked for LB and so, for me.

As you can see from today, LB’s unbounded personality touched many, many people – not only those who lived with him – but, on occasions, people none of us had ever met or even heard off. A whole set of people across the region that knew him by name, sight or by his habits. He was simply known, or example, as the ‘tall, lanky young man’ at the much visited Oxford Bus Museum and frequently we would run into people on our daily errands who LB knew and who knew him – always quick to win hearts and friendship as well as any free food that might be up for grabs.

And food was something LB loved – certain foods more than others its true – but food was a passion – whether it was secretly eating 21 deserts at his grandparents birthday party or savouring the regular Sunday lunches with his Dad and family.  It was particularly unwise to leave lemon, coffee or chocolate cake unguarded if you hoped to have a slice yourself.

One special thing (amongst many) that LB taught us and we would all do well to remember, was how to take special pleasure in simple things. In the love for the everyday, for the gentle pleasures of just being with each other, of our surroundings and in the immediate. He loved nothing more than lounging in the sun and enjoying the warmth of a slow, sunny afternoon. He simply enjoyed being, being himself, being with all his family, his friends and, especially with Stan the dog – who towered over the rest of us in the hierarchy of LB’s love.

Gentle and compassionate, his innate understanding of the way of things would be imparted in quiet chunks of insight, determined questioning and, at times, reassuring homilies. One holiday in Devon he spent many hours talking to three fine Aberdeen Angus bullocks who faced their last few days before slaughter in a nearby barn on the campsite. Touched by their plight LB sought to reassure them that despite the inevitability of their impending doom, they would feel little or no pain, that they were headed for better things and as this was their destiny they should embrace it and not worry or be distressed.  When asked where this ‘better-place’ might be he replied the supermarket and the dinner plate – his compassion real but also realistic.

All this said and despite his generally relaxed approach to life he had a fertile and lively imagination and at times would live out complex life scenarios in very short spaces of time with awe-inspiring intensity. Be this managing his football guys to World-Cup triumph or tackling local crime and disorder issues.

His biggest dream was to run his own transport company – ConnorCo as it became known – which was to be based in County Mayo. He had the livery, the range and number of vehicles, the routes and even the pay-scales and overtime rates all worked out. It was the best transport company you could ever imagine– and those trucks and trailers, flat-liners and box-vans will rumble on forever in our hearts and in our memories of this beautiful and magical son, grandson, brother, nephew, cousin, friend and young man.

I wake up and momentarily orientate myself. I’m in bed. Daylight. Car door slamming. A bus passing on the London Road. Must be morning

And then I remember all over again. LB is dead.

Not sure how to even start to type this. Words skit around, like random bugs /moths in the now chilly candlelight. Wrong, inappropriate. Out of place. Fucking inadequate. It’s exhausting being in a place that is so impossible to make sense of. A space so beyond awful that the usual rules of anything are suspended. It’s a terrible space to be. But one we can’t escape from.

Big sis came over today. We made a start on LB’s clothes. The ones on his bedroom floor. A mixture of ‘unit clothes’ and ‘pre-unit clothes’. We made a superficially good start with a ‘pile to keep’, ‘pile to shift’ and ‘pile to return to school’ (LB had a bizarre habit of acquiring school uniform without ever appearing to come home in anything other than what he’d left the house wearing). The top layer we dealt with was clothes from the unit. The boiled stuff. Clothes washed so regularly and at such a high temperature, they were like fake clothes. Slightly smaller, slightly tighter and no longer resembling LB. But hey, I admire other people’s efforts at hygiene when I fail so regularly at my own (particularly now as baths are out of the equation).

The ‘keep pile’ at carpet level (yes, we are that cluttery/cruddy) had t-shirts from four months ago that smell like LB. I syphoned some off into a pile to remain unwashed. The Homer Simpson t-shirt he always slept in is rich with LB whiff (a mixture of body odour and deodorant as Tom describes it). The power of these smelly smells is indescribable. They take me straight back to the days of saying ‘Phwaor LB, you stink mate’. They create a here and now presence of the dude that I know is temporary. An almost false, teasing way of trying to hang on to his essence for a tiny bit longer.

This is kind of in contrast to our experience of losing him so catastrophically. Without warning. Of dealing with seeing him dead in such terrible circumstances.  We never saw our dude again outside of institutional spaces. But here at home, with these clothes, I can start to remember him as he was. Not what he became. The potential fading of the smelly smell of the t-shirts is, in itself, heartbreaking. But we can’t stop it. The smell is probably already diluted through a combination of fresh air and my tears this evening. ‘Maybe put ’em in a sealed plastic bag’, suggested Rich, love him.

In the background to today’s smell journey, we received the ‘TOR’ of the NHS internal investigation. TOR???  [Rage]. Terms Of Reference. These ‘terms’ decided by some NHS bod as s/he hands out industrial size brooms, layers of carpet and buckets of tipex. Pre-written scripts carefully worded (and drenched with jargon) to say absolutely nothing of any meaning.  The predicted outcome; a collective shrug with a ‘We didn’t do it guv’ chorus. Internal investigation? What a farce. With a right old pong attached to it.

We went to London this morning, to change the contract phone Tom got for his birthday two weeks ago. (Don’t ask, but Three mobile did not come out well in this episode and Rich nearly got arrested). We did a back street traipse to the Apple store in Regent Street, to avoid Oxford Street. Way too many memories in Oxford Street. But memories are everywhere. Dripping from everywhere.

In the entrance to the shop, was a large picture from Up. LB had the first seizure we recognised as a seizure during Up. He became hugely distressed about the mild peril to grandad, Russell and Dug and behaved so oddly we started to think about epilepsy. Back in the day.

After that, we got a referral to neurology, but were discharged by the neurologist who said he needed to control his anxiety (more star chart type advice). Yes, the writing on the wall – of catastrophically poor care – was apparent even then. A set of tonic clonic seizures involving the (lovely, lovely, as always, paramedics) a short while later led to a re-referral. The fact he had, in the interim, grown too old for children’s services, meant the referral was bounced back from the hospital and the GP had to re-refer him to adult neurology. Delay was also an integral part of catastrophic care (as was the persistent lack of listening to us as LB’s parents). But there was no concern, no reflection about the delay in diagnosis (and potential risk of this delay to LB). We just had to suck it up.

The diagnosis of epilepsy arrived in the end. I mean I ain’t no medic but having witnessed him having a tonic clonic seizure in our living room with the backdrop of the paperwork detailing the previous seizures, I could have diagnosed him myself with complete certainty. But process are processes. And, with the NHS, the wheels of bureaucracy turn pretty slowly when you’re negotiating the healthcare of learning disabled people.

The medication prescribed at that point controlled LB’s epilepsy for over a year until new drugs were introduced to try and contain/control/reduce his increasing mental ill health in December 2012. And the seizures re-started.

I walked behind Rich, Tom and Owen after the phone was replaced. Reflecting on the enormity of the loss of one of of our cubs. The one who arguably needed the most protection. But then the rage kicked in again, as I thought about how we’d kept him safe for 18 years. How we slept in his room the night after he’d had his seizure at the end of December, last year. The thought of leaving him alone that night was too awful. Rich and Tom piled in too.  A sleepless, uncomfortable, stressful night. In the morning, after bed shifting and movements, it was LB and I. He’d slept brilliantly.

Sadness on sadness. With a rage topping.

Bastards.

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.