195 days on (in?) and the internally commissioned external investigation into LB’s death is due to be completed soon. 195 days. Iron cage stuff. Before these 195 days there were the 107 days. 107 days that LB was in the unit. 302 days. And the stuff before that.

Blimey. Numbers. I’m not a number person at all, but these numbers are important. They add up. An unspeakable, unimaginable experience over so many days.

This report will signal a moving along of the ‘process’.  A process that seems to operate largely to chew the insides out of ‘bereaved’ families (despite the best efforts of INQUEST.org and the INQUEST lawyers group). Next stage; the organisation/planning of the inquest.

Tomorrow will be 196 days. Or 303 days. And the stuff before that.

Been thinking quite a bit about this whole post-Winterbourne stuff (as usual). This is going to be a bit disjointed but I hope I make some sense by the end of it. To start, have a read of Chris Hatton’s post about Winterbourne View and institutional ‘care’ in the UK. I’m sure I’ve linked to this before but it deserves to be linked here, there and everywhere.

Quoting from this;

“Jim Mansell and a very talented team in Kent demonstrated in the 1980s that it was possible for people with learning disabilities and the types of challenges often used by specialist residential services to justify their existence to live fulfilling lives in the community, with the right, individualised support (see the revised Mansell report; 2007).

Jim was a remarkable man and, as a colleague who worked closely with him wrote to me recently, he’d be turning in his grave if he could see what was happening.  At least 3000 people still incarcerated in assessment and treatment units in the UK at the last (vague) count. So much research into provision for learning disabled people in the UK and no real change in many ways.

Then a friend messaged me after meeting her son’s adult social care manager;

We had a visit from the social worker to talk through an endless form about T and adult social care. I really struggle with it as I object to the way that she phrases almost everything! Always T’s problem – not crap communication etc on the part of others. Eventually we talked about independent living and I cried as I do every time it is mentioned. And I told her what had happened to LB and why I worry so much about putting T in someone else’s care. She was shocked but it wasn’t until I listed the lack of a battery in the defibrillator that she exhaled in amazement. No patient interaction, face down restraint, but the true shocker was the missing battery? Kind of explains why I cry, doesn’t it?

Many of the ‘post Winterbourne’ discussions tend to start with the caveat; “Er, horrific abuse uncovered at Winterbourne but this level of abuse isn’t apparent elsewhere… We’ve just uncovered a lot of non-compliant units”. It’s peculiar that ‘full on, nasty, physical, caught on (Panorama) film’ type abuse is given some sort of special status. As are missing batteries or out of date oxygen tanks.  The lack of patient/staff interaction, careless use of face down restraint and sustained neglect over months, or years, of people isolated from their families and their local communities is treated as somehow less important.

While I understand that the visual images captured at Winterbourne View are completely shocking and harrowing, surely people (particularly those who work in health and social care, and particularly those who have anything to do with these places) can understand that leading an incarcerated life without engagement, interaction, interest, activity or aspiration, behind locked doors, often a long way from home, is truly fucking shite.

Given that little has actually changed since the Panorama film and the bucket of money chucked at making changes ‘post Winterbourne’, I wonder what has to happen to lead to real change.

Here are a few (outlandish but hey, what is there to lose?) suggestions:

• A Big Brother type set up in the currently empty STATT with a selection of key health and social care figures living the life of the typical inpatient for three weeks. [Channel 4 would snap it up. Happy to come up with some names if necessary.]
• A mockumentary where an investigation is underway at a STATT like unit where household pets/animals are found locked in and deprived of therapeutic environment.  The missing battery is less relevant here. [There would be a stampede of ‘celebrities’ queuing to host, comment on and campaign against the filming of any further episodes. Media attention guaranteed. Ricky Gervais at the front of the queue without a sniff of irony.]
• A diverse group of secondary school aged kids go to work in an Assessment and Treatment Centre for a couple of week, overseen by a panel of learning disabled people, carers, relevant third sector organisations and interested ‘lay’ people. Tasked, through open discussions, unconstrained engagement and spontaneity, to come up with a set of suggestions and alternatives to inpatient life. Learning disability life and imaginaries through a set of fresh eyes.

Given our experience of the young people/children who have hung out with (or come into contact with) LB or his classmates, over the years, who have sucked up difference, unusualness, quirky and sometimes ‘in your face behaviour’, with little comment, slight adjustment and an embracement/incorporation that needs no mention or recognition, I can’t help thinking we’re looking at the wrong places for answers.

I dunno.

LB died six months ago today [yesterday..] I’m not sure I could tell you if it was six months, six weeks or six minutes very accurately. I hold onto fragments offered by others or time bouncing in and out of consciousness depending on what I’m doing. I’ve kind of thought in terms of Thursdays really. Becoming aware around 9ish to 11am wherever I am most Thursdays of the significance of this ‘time’. Often with a backdrop of a siren or two courtesy of living so close to the JR hospital.

But today is the six month mark. And, oddly, it’s 12 months to the day since LB had his first seizure for more than 18 months. The seizure was caused (almost definitely) by new medication for increased anxiety.

The story (is it a story?) I tell on this blog is largely about mothering. This isn’t to detract from all the other stories that could be told. I’m just telling it as his mum. That day, 12 months ago, I was terrified of SUDEP. This fear led to Rich, Tom and I sleeping in LB’s room. A kind of family solidarity event. It was one of those nights that lasted forever (which I’d conjure back in an instant if I could) and ended, in the early hours, with LB and I in the room. He was oblivious and paid no attention to this invasion of his sleeping space. Probably still basking in the attention of the paramedics.

The following weeks followed a pattern of increased anxiety, unpredictable behaviour, despair, tension and no support until we admitted him to STATT on March 19th.

The rest of the story will be told in time. It’s a story on hold for now. We’ve learned a new version of it in the last few months. A version that makes me weep, howl and almost want to disappear. A story that no mother should ever have to confront. Or endure. But a story under wraps for now.

I’ll keep recording my thoughts and reflections about the broader process for the time being. I’ll continue to analyse any inappropriate documentation/letters and minutes I come across (or get sent) [Appropriate ones will be acknowledged – and more than welcomed – too]. And basically continue to be a right old pain in the arse.

These actions don’t much help much. They highlight how crap and limited system and processes are. And shine some light on the culture that exists around learning disability provision. They generate a level of transparency that wouldn’t happen otherwise. Who knows, maybe they shake/provoke different engagement for some of those people involved? Possibly not.

They are displacement actions for me. The extent of the pain, anguish and rage I feel about LB’s death is beyond words or imagination. A pain that haunts every part of my being. But a mothering instinct kicks in with bells on when your child dies in such circumstances. When this child was always at odds with expected ways of being and completely unarmed to protect himself, particularly when he notionally reached ‘adulthood’. An unassailable rage.

I have to say (and I know Rich agrees) that the thing that has kept me from some sort of breakdown (so far) has been the support and actions of people we know – family, friends, colleagues and others (far ranging others). I’ve said this before, probably over and over again but the countless ways people have responded to what happened has been remarkable. And faultless. And again, a learning point for me (being slightly ironic here because I know I will feel like punting the ‘learning points’ that emerge from this process into the river like Baxter) when someone dies unexpectedly is don’t shy away or avoid, instead approach, say, write, email, text, tweet, leave a comment or whatever. Simply acknowledge in some way. However small.

Here’s to the countless people who clearly already knew this.

The NHS is a right old hot potato at the moment. Current debates remind me of the overly rehearsed tensions between medical/social models of disability. How can the challenges associated with having a particular impairment, or long term condition, be recognised without feeding perceptions of disability as something tragic? Fears that the NHS is under threat of privatisation seem to be stifling any sensible, informed criticism of the way it operates.

Our experience of Southern Health, the NHS provider running the assessment and treatment unit LB died at, has been appalling (not just for the obvious reason but also because of the way they’ve handled the situation since LB died). We’re baffled by this treatment and the silence surrounding it. I don’t know how many posts I’ve written detailing crap stuff after crap stuff, ending with the plea ‘Is someone going to do anything?’ I don’t know who I mean by ‘someone’, but not sure it’s my responsibility to do so. These are publicly funded organisations, for fuck’s sake.

Tumbleweed continues to gather around my pleas, despite discovering that more and more organisations were implicated in what happened. Our MP, lovely guy but completely ineffectual, sent me a letter from the Director of Community and Social Services the other day. A load of flannel; working closely with Southern Health, etc etc. Bland, meaningless drivel. I despise these letters now.

Then, one of the army of enraged ‘lay’ people forwarded me an email exchange with one of the Oxfordshire local authority commissioners. Yes, a commissioner. Let’s call him/her Commissioner X. Read this, weep, and ask yourselves if there is a serious issue with the NHS and the structure of health and social care services in this country.

“It is evident however that the quality of the service at STATT, which had been person centred at the point of transfer to Southern Health in December 2012, deteriorated significantly over the period of time in question and I am very sorry that what was held to be an example of good practice had such a poor report from CQC. I’m afraid we have to hold Southern Health responsible for that deterioration although we don’t say so publicly as we don’t want to knock confidence in such a large provider.”

Commissioner X, our son died in that dump.  And I really don’t give a rancid rat’s arsehole if their confidence is dented. It needs denting. Why wouldn’t you openly challenge this? It’s a matter of public interest. And the provision couldn’t have realistically deteriorated to that extent in that time. Nonsense. I’m shocked and ashamed that Southern Health’s dirty little business is being protected by commissioners and the local authority. What a set of deceitful, underhand, shoddy and stupid practices. Lacking in any decency.

I suppose the tumbleweed makes a bit more sense now. I’m giving up asking for anyone to do something now. You’re all a bunch of self serving sheep.

Bastards.

Still being nagged to post funny stuff and failing. I’ve drawn a cartoon strip type effort today.  Drawing this caused some laughter this afternoon so it possibly counts as funny. It took bloody hours as I’m obviously not a cartoonist (if a cartoonist wants to run with it, please crack on and share the spoils) so please just suck it up. It was kind of fun to do.

And, to add a note of authenticity/gravity, I photographed the drawings on the bag of LB’s clothes we’ve sorted out to give to school. I didn’t do this deliberately. Just functionally. But it’s a level of detail that keeps it real. Charlie’s Angels (Sue) were unable to think about taking this bag last time they came round.

Oh, and please read it carefully. It is completely shocking.

A new year. At last. Although my lovely mate Gail, whose husband died suddenly a few weeks before LB, captured the whole new year conundrum brilliantly yesterday. I knew I’d be in pieces as 2013 drew to a close. Relieved to be shifting on to a new (and hopefully less harrowing) one but also beyond devastated to start the new year without LB. With the kids warned and low key (no) plans in place, I wallowed in home movies and old photos yesterday afternoon. Sorting through disc after disc of LB’s school photos. By 10pm I was in bed, listening to music, Sooty tears in full flow. I missed the midnight celebrations. Instead I wept. And wept. And wept a shedload more.

This morning I woke feeling strangely calm. Kind of peaceful. A bit odd but good. Maybe because I’d been able to park all the shite around what had happened – the rage, the intense disbelief and incomprehension, the horrible, horrible details/actions – and just think about LB.

Maybe because 2013 was finally over.

I know this reprieve from the pain, the loss and the process that accompanies something like this, will be short-lived. The (internally commissioned) external NHS investigation will be finished in the next couple of weeks. Another battering before inquest plans are made. But for now here’s to a patch of peace. And a new year. Hopefully a better one.

And here’s a blast of LB’s later school experience. Love him.