I’ve spent the week walking round with the internally commissioned external report into LB’s death in my bag. All 115 pages of it. The saddest of saddest times.

Since receiving the report there have been so many moments where I’ve wanted to pull it out, wave it under people’s noses. And say “Look. Look at this. Look at what’s written here…” On the bus, in meetings, with friends, in the street, at work, at home.

A horrible, raging inability to make any sense of the incomprehensible. Combined with a desire to make this incomprehensibility more social. To find a way of making it understandable.

I can’t do this of course. The report is confidential. If you didn’t know. And staff names have been redacted.

The covering letter from the Clinical Director of the Learning Disability Division that came with the report has five paragraphs. Summarised as:

1. Very sorry to hear about LB’s death (six months on). Please accept my condolences.
2. Report enclosed. Appreciate reading this report will be difficult.
3. Names of staff have been redacted. Duty of confidentiality as an employer. Action will be taken as necessary in accordance with appropriate Trust policy.
4. You can discuss report and redaction of names at meeting with Southern Health/investigators on 23.1.14.
5. Report is confidential. Don’t disclose content.

If you’d read the report, you’d probably wonder (as we have) how anyone could write such a covering letter, focusing largely on staff protection and confidentiality. And how the person (legal team) who wrote this letter could continue to chuck out such meaningless statements as “in accordance with appropriate Trust policy”. Was there no “duty to keep patients alive as a healthcare provider”?

Does anyone at Southern Health (the CCG, Oxfordshire local authority/social care, Adult Safeguarding Board and wider…and yes, you are all implicated) have any understanding of what it must be like to leave your child in the care of a specialist NHS hospital and for him to die? I learned on Monday night that research into the views of the ‘Winterbourne View families’ found that they felt they were the only ones who actually cared about their children. There is little evidence that LB was cared for/about in the unit, or that anyone involved has given a toss since. Other than about reputations of course. It’s been process and procedure all the way. Most obviously led by the “Southern Health Manual of Muppet Rules and Policy”.

There’s a lot of interest – media and otherwise – in the content of this ‘confidential report with the names redacted’. We postponed the meeting planned for today with Southern Health and the investigation team because, having read the report, we’d like our solicitor to be present. The meeting is re-scheduled for next Thursday. We can’t imagine this meeting. How to even think about bridging the gulf between our grief, heartbreak and intense pain, and the relentless and dogged efforts of Southern Health to protect their reputation and their staff.

The only point to the meeting we can see is to thrash out the ‘confidential’ status of the report. The investigation has pretty much done what it says on the tin. Uncovering how a largely fit and healthy young man with diagnoses of epilepsy and learning disabilities could drown. In a hospital unit with five patients and a minimum of four staff. A hospital that subsequently closed following a damning CQC inspection. It really ain’t rocket science.

The content of this report should be in the public domain. It’s a matter of public interest. How could it not be? The death of a young man in an assessment and treatment unit two years after the uncovering of the  Winterbourne View abuse demands public scrutiny. The death by indifference campaign can’t continually be swatted away. This is off the scale of unacceptable.

Oh, and while we’re on the subject of unacceptable, another Southern Health learning disability/mental health unit has got enforcement notices from the CQC this week.

What is it going to take?

Last night I went to a meeting with parents, OxFSN and Bill Mumford. Bill (I think I can call him that) attended in his new role leading the Winterbourne concordat jobby. He’s only been in post a couple of weeks so it was cheering that he pitched up on a miserable evening to hang out for a couple of hours.

After talking a bit about his background and plans to reduce the number of people in assessment and treatment units over the next 18 months there were questions, (robust) critical comment and reflections. Lack of (and short term) funding, inappropriate ‘placements’, cuts, lack of knowledge and understanding, misuse/misunderstanding of the Mental Capacity Act/Court of Protection, lack of information, fear… and much more.

Harrowing tales were told. Abuse, unexplained bruising, excluded parents, distances of 200 miles to visit units, previously happy, person centred experiences crushed by withdrawal of funding, patients told they had to earn tokens before they’d be allowed out (or across the hallway to a different part of the unit) and experiments (‘experiments’ were left unexplained.. no one went there). Pretty much everyone whose children had experienced inpatient care had a tale to tell. And there was a historical context underlying the discussion. This wasn’t new. Creative ideas had been floated in the past and people present had heard a lot of it before. Without change.

At the same time, there was an energy, commitment and passion for change. A  sense of collectivity and shared experiences. OxFSN have been doing comprehensive work around what would help parents when their children enter inpatient care. They’ve spoken to parents, carers and various key figures to explore how to support and empower. An uplifting force was apparent. A peer support network of trained advocates was floated. Families helping families. Alongside existing ‘services’.

I sat next to Pat. Pat is in her 80s. Her son, J, had two spells in STATT, one ten years ago. ‘Before it deteriorated’.  We shared stories. She’d not spoken to anyone whose child had been in there, despite J’s long stay. Pat was a real character. Her freshness, humour and no nonsense engagement was a tonic. She’d dealt with the system for 56 years and bristled with energy and forthright thinking. She made me laugh out loud a few times during the meeting. At the beginning, we were asked to sign a sheet and add our email addresses. Pat didn’t do email. She had an email address but would “never, ever use it”. Her home computer took forever to start and she refused to use it. She wrote her phone number. During the discussion, people asked if they could get a copy of the scoping document outlining the work OxFSN were doing. Yes, it could be emailed round easily.

“I don’t use email” said Pat, repeated firmly. “I’ll need it delivered.”

At the end of the meeting, there was a rounding up of the discussion and a ‘last thoughts round’. Bill raised social media at this point and said how important he’d found twitter and blogs written by parents, including this one. It was an effective way of understanding individual experience.

“I’m going to get an ipad.” announced Pat, as we started to leave. “My husband said he’d get me one. I’m going to get one. And, when I work out how to use it, I’m going read your blog, Sara.”

“Er, there’s a few swears in it,” I said. “Especially to do with STATT…”

“Swears? To do with STATT? I can deal with swears about STATT,” she replied, a twinklet in her eye.

So a collective ‘good on yer’ for us parents, OxFSN and Bill Mumford for a productive and open discussion. And here’s to change. Maybe it’s more straightforward in some ways than we anticipate.

And so it arrived. Not too long to wait despite our cranky doorbell ringing randomly at 6am, catapulting us into meerkat like ‘waiting for the courier’ activity. A long four hours or so but we’d been waiting six months.

Rosie posted ‘Remember the good times today…’ on my fb page. With a link to the Beatles.

I did. Eventually.

Here’s a photo from our last family holiday in Wales in 2010. Bag of sweets and a bus magazine. And LB in his beloved Chinatown.

Happiness, sunshine and Olympia Horse of the Year show years.

We now know the internally commissioned external investigation draft report* will arrive by courier on Saturday morning.  It’s good to know exactly when to expect it but this is an enormous thing to wait for.

So enormous, I’m not sure how we deal with it really.

Not your usual post that’s for sure. I doubt the courier will have any idea of the importance of what s/he is delivering. Of this carefully crafted set of words relating back to last summer and earlier. To when LB was alive. If I open the door maybe I’ll mention it in passing as I sign the receipt. Or maybe I’ll hide in bed. Gnawing on my knuckles until it’s signed for.  It’s tricky when you don’t have any reference points to make sense of ‘reading an investigation report into your child’s death in hospital’.

Then there are the decisions around how to read it. When to read it? Where to read it? Rip it open and devour every page on the spot? Make a cup of tea and settle down in a chosen space (based on what criteria?) Carefully read each word (when?) in an account that may (or may not) shed light on how what happened could possibly have happened.

That’s the biggy of course. We think we kind of know this already. Having read every written record relating to LB’s care for the last six months and the CQC report a couple of months later. It seems a bit bleeding obvious. But there may be further lurking horrors to discover? Nah. Surely not. There can’t be… Or the report may not resemble what we think it should or could.

We have no idea what a report like this looks like. How it’s framed. Will it be about LB? Our dude. The legend. (And self identified ‘pagan’ as his second to last school report noted). Or will it focus on ‘learning outcomes for the NHS/social care’? Will LB be consigned to the ‘lessons have been learned’ dustbin (or plastic yellow hazardous waste bag his clothes used to arrive back from nursery in)?  What will we do with the conclusions (if any) of the report?  What will any of this mean?

What will/can it feel like to read a report like this? 

The old sense making sensors are already on full alert. Tough times ahead.

Well there ain’t anything we can do about this. We just don’t know. The report will arrive on Saturday. We’ll read it. And Chunky Stan will be doubtlessly be in close contact. Providing unlimited furry comfort.

I’m thinking the advice from a lovely mate from earlier today is probably worth a punt; try and think about the report as a necessary step to get through in this (hideous) process. It’s a step forward.

In which case we should probably stock up on ice-cream and ginger beer. And have Keane lined up ready to blast out. Like old times. Creating our own reference points.

*The content of the report will, for now, remain confidential. And all that crap.

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.