I came across Sloven’s 2013/4 Annual Report today in which they make the extraordinary claim that they are 100% compliant with Duty of Candour obligations (p121).

100% compliance? Eh? How can claiming LB died from natural causes in July 13, failing to disclose his full medical records until November 14 (via the coroner), accepting that his death was preventable in February 14 and then claiming again he died through natural causes in November 15, fit with duty of candour compliance? How can not sharing how Nico Reed died with his family for nearly two years be candour compliant? Or do learning disability related incidents stand outside this indicator?

Up until the last couple of months, I’d probably have written to the Board chair asking for some clarification on this. Not any more. The OCC report (OCCRAP) and their response to my obvious and fully justified distress about this report, on top of the various brain melt communications we’ve had with the now ex-Sloven Board chair/still-in-post CEO documented on these pages, have demonstrated that they have the power to do what they want. Including telling the most fanciful of lies and sticking them.

It’s simply one fucked up, archaic and sometimes corrupt system.

This afternoon, stuck on the Oxford Tube coming out of London, I was reading negative academic related stuff on my twitter timeline. Then my niece forwarded her undergraduate dissertation. She’s just completed a degree in linguistics at Leeds. For her dissertation she did a critical discourse analysis of four documents; Sloven’s public statement on the publication of the Verita report, their briefing document to Monitor, and letters from the CEO and Board Chair to us.

I still don’t fully understand what transitivity is but non-apologies are pretty straightforward. In a kind of a random shambles; human, mother, (proud) aunt, campaigner, academic, raging woman, Oxford Tube captive and probably other identities, I read this dissertation. Between Hillingdon and Lewknor.

I was struck, in particular, by three things. First, it’s an example of an undergraduate dissertation that’s robust, rigorous, relevant and political. I’m impressed by both Ally’s work/focus and the encouragement and support she was obviously given by Leeds.

Second, (and I won’t say much about the content right now) the conclusions are clear, carefully evidenced and show that Sloven (and probably other NHS Foundation Trusts/local authorities) don’t operate anything approaching a whiff of candour, openness and transparency.

Third, if an undergraduate student can produce a clear, critical and well evidenced piece of research demonstrating this, why is so much meaningless talk still being talked?

Found out today that the investigation into the actions of the unit staff member we referred to their disciplinary council in May 2014 is further delayed because new information* has emerged that will feed into this investigation. Wow. Every aspect of trying get accountability for what happened to LB has been delayed. Interminably.

The two forces of darkness, as I now see Sloven and OCC, are key delay players. Sloven explicitly, through non disclosure of documents, sitting on reports and generally being obstructive. OCC are slightly less obvious but do a cracking number in delay on the quiet. We now have to wait while their ‘independent’ consultant goes through the issues we raised about the ‘independent investigation’ they conducted into LB’s death without informing us. [For the ease of clarity here, I’ll call this report OCCRAP]. Apparently he’ll do this sometime next month.

[NB: In the delay game, there are no deadlines. Just vagueness. The only deadline so far is LB. And he had no say in that. Everyone (other than families) has  flexibility and resources to do what they want. Without remorse, reflection or hint of humanity].

The coroner sensibly said he wouldn’t read OCCRAP until it had been revised. Verita read it and are waiting to hear OCCs response to our response. Their report, (Verita (2) [sorry], has a delayed publication date which is now expected sometime in the next month or so. [Verita (2) officially started September 2014 for six months].

Our response to OCCRAP was, and remains; ‘Bin the fucker. Pile of toxic shite’. But this response is discounted. We have no power (underlined by the absence of challenge from those who could). So we were forced (bullied) into examining OCCRAP line by line and documenting inaccuracies. A process of phenomenal wastefulness, inefficiency and unspeakable distress.

We’re left wondering when did reputation (and vested interest) became the overriding consideration of ‘public’ bodies?

And how can so many in influential positions sleep so apparently contentedly through this? *Thank you to the person/s who came forward with this information.

I found out this week from an unusually humane ‘official’ source that the Sloven staff disciplinary actions for a chunk of staff were very thorough and a range of actions were taken. Disciplinary actions for another ‘type’ of staff were deemed unnecessary. These staff had done what they could reasonably be expected to do and this had been agreed by an external bod.

‘Mmm.’ I said. ‘Good to hear it was a thorough process, but odd about the latter decision given we referred a member (of favoured staff) and this has been the subject of serious investigation since last spring.’

Nothing like an equal playing field.

The more I read or get told about what happened to LB, the more I despair. Sloven Towers seems to have anti candour armour with Deny, Deceive and Delay stitched throughout. The 3Ds. Allowing no space for remorse, sadness or open reflections about what happened. Reading the various reports/records/FOI documents, there was no epilepsy. No seizure activity.

This is core CIPOLD fodder really. LB was ‘learning disabled’ so his right to any other diagnosis was compromised from the off. He had to wait the best part of two years to get an epilepsy diagnosis (despite two ambulance trips to A&E and various other reported seizures involving paramedics). While the earlier absence type seizures were puzzling the tonic clonic numbers that followed left no doubt.  A tonic clonic seizure is, as anyone who has seen someone experiencing one, clearly an epileptic seizure. A harrowing experience.

LB’s eventual diagnosis was pretty low key. Some 1950s medication prescribed by an A&E doc, an appointed neurologist, but no invitation to attend ‘First Fit’ clinic at the John Radcliffe Hospital. A handwritten note querying this is scrawled on hospital records but notes are notes. Not action. Maybe he’d had too many ‘first fits’ to qualify for entry to that particular club. Or maybe the learning disability label meant such an invitation was inconceivable. Who knows. It didn’t happen.

Soon after LB died someone from Young Epilepsy contacted me about speaking at some school related event about epilepsy. During the telephone conversation, when it became apparent that LB had been at a special school, the invitation was rescinded and the call ended. Wow. I thought. Sitting at work, receiver in hand. Denied epilepsy legitimacy in death as well as life. Wow.

The canyon that separates ‘official’, publicly funded, engagement with what happened and our experience remains immense. One of Tom’s school mates said to him this week that coming round to our house now is kind of like having pasta without cheese.

I so know what he means.

Imagining Sloven or Oxfordshire County Council (and probably other) peeps reading this, I can hear them bleating “There’s no such thing as cheese or pasta. He’s talking rubbish,” without missing a beat.

Because LB didn’t matter.