Memories, grief and ‘old’ social media

Yesterday I was a bit thrown by facebook chucking up a post from December 31 2012. Bloody facebook I thought. That was a curveball.


First thing this morning, Mark Neary tweeted about his distress at watching a video with Stephen, of him and his classmates doing Bananas in Pyjamas fourteen years ago. Given that half the kids were now in ATUs, miles from home in residential provision or dead [dead?]

I replied to say that Fran had a picture of her son James, LB and another classmate as cheerful chappies in primary school. Not a care in the world. Not a sniff of what lay ahead of them: in various ATUs for over two years (mostly in Newcastle), James’ experiences touched on here and LB. Three classmates. In a class of about ten. Now aged (if still alive) 18/19.

What happens to these kids is simply inhumane and should stop people in their tracks. They are just kids. Like any other kids. And yet their lives seem to close in on them once they reach adolescence and the toxic space called transition. Which involves, sooner or later, a varying combination of the misuse of the Mental Capacity Act, financial stick waving by the local authority or clinical commissioning group, ill health and/or a cutting off/sidelining of family love and care.

I had a scooby back in time on facebook tonight. I’m not a big facebook fan but am a sucker for any LB snippet. Trying to hold on to him. Trying to keep him ‘alive’ in whatever space possible.

This was a bittersweet experience. Lovely to be reminded of happier times. But also dates leaping out at me. The happy hippy wedding was almost three years to the day to the day he died. And reminder of context I’d completely forgotten about. Anna Chapman. (Who?)

fb stuff2

The interactional context was also warming.Throwaway comments at the time. Chat. Or banter as Tom calls it. The grounding of LB’s life, and our lives, in a space in which family and friends commented in the moment, later, or returned to photos after LB’s death.

And then there were just posts.

fb stuff

I’ve only been able to dip into, and quickly out of, old blog posts so far. But I’m glad I captured those moments of everyday life. I’m glad I used to be forever snapping happenings/’non’ happenings with my camera. Capturing the life of a young dude whose life was worth nothing within NHS/social care spaces of ‘care’.

LB’s shortened (howl.howl.howl) life enriched, added colour, illuminated, made human what was seen to be less than human, and just was.

He was delighted to win the prize for achievement and endeavour in July 2010.

PALS and fuckwattery

Seems to be the case that Sloven can lie, spin and bully to their hearts content. I received another letter from the Board Chair this week. Billy bullshite strung together by the stubborn stains on a pair of Sloven undercrackers. Then Sloven, seemingly in cahoots with that bastion of glitzy self award ceremonies *cough cough* razor sharp reporting, the HSJ, stated that Katrina Percy stepped down from the RCGP Inquiry into Patient Centred Care in the 21st Century last summer. For the greater good of humankind.

Given that myself, Noelle Blackman and Chris Hatton had a fairly awkward, distressing (for me) and lengthy discussion about KP’s place on this inquiry with the chair, Mike Farrar, on October 6th, this latest statement from Sloven Towers is yet another lie. But hey, maybe her resignation letter got lost? Maybe, as the Hatt suggested on twitter yesterday, it’s what the woman in the Going Viral video was looking for?

We have a chuckle in the justice shed.

But actually it’s pretty shit really. Given these practices can just continue even after they are exposed. I’ve documented terrible treatment towards us on these pages. To what end? More tumbleweed. Apparently we need to put in an official complaint through (Sloven) PALS (Patient and Liaison Service – I think).

I made a complaint about Sloven in March 2013. My main complaint was that I wasn’t listened to. After some delay (obligatory) I received the outcome in June. Complaint not upheld. Two weeks later LB died because I wasn’t listened to.

Fuckwattery anyone?

Seasons, death, puddings and earth

Bit of a stark title but I wanted to head off any sunshine seekers/death or misery avoiders.

[Er, close tab now if you are any, either or all of these].

A definite turn in the weather today. Late autumn sunshine to complete shite. I spent the day at a symposium. Held a bit closer to the cemetery than our office. I grumbled and mumbled about foul bus journeys in the Oxford rush hour. Delay, crowds, dripping water, condensation, sniffing and a coughing.

All the while I thought about LB. And wondered about the rain and the gound/earth. A mile or so away. The cemetery staff have topped up LB’s grave with earth and sown grass seed. Carefully re-arranging the collection of buses and other stuff. Bloody love em. Another stark reminder of simple acts of care so absent from LB’s life in the last few months.

I was further reminded of seasons with the latest vimeo (sigh) from Sloven, in which the CEO carefully explains to staff the timeframe for the findings of the CQC inspection that took place last week. Trying to ease potential staff concern/worry. Drawing on changing seasons. January is the expected time of findings. A short four months from kick off.

LB was hugely patient in many ways. And so ordered. He was renowned for his love of puddings and cakes. Sitting at parties/BBQs to finish his nth pud. When everyone else had moved on to other party type stuff.

Complete concentration, absorption and  contentedness. And a joyous lack of concern about what anyone else thought or expected of him.


Given that LB lost his life and we’re left struggling to hold on to some semblance of normality in the wake of his death (and the complete crap chucked at us since) it would be good to get some sort of  resolution before the slow wheels of reviews/police investigations. Some answers about staff disciplinary actions or surveillance-gate.

We’re now beyond the four month mark. Nudging six season changes.

I don’t know how much I need to describe the experience of having a child buried when it rains. But the Trust and other others responsible for, or connected to, LB’s death could do a fucking shedload more to make it less painful and, as an absolute minimum, not make it worse.

The Wrong Nolan(s)

The Mother Blog Briefing continues to chill me. I woke in the early hours with a sense of horror and deep distress. Glad to read Tim Turner’s thoughts on the data protection issues raised by this document. Some relief in hearing sense.

A blog briefing. Within 24 hours of LB’s death. A blog monitored for months yet no engagement with the content. Other than scrutiny through a reputation and defamation (hungry) lens. Missing the warning signs of missed seizures and lack of action. Post Winterbourne View. So revealing of the disconnect between humanity and process that pervades health and social care.

I listened to the Sloven Board Chair talk for over two hours a week or so ago. My head spun and I felt sick afterwards. Simply bullshit.  Eau de Sloven Shite.  Not intentionally, I’m sure, given the sincerity he tried to convey. But lines fed to him by the senior Sloven team, swallowed and regurgitated. Despite the complete absurdity of much of what he said.

  • He can’t walk down the corridor in the upper regions of Sloven Towers without someone stopping him to tell him of my international reputation (if only) in learning disabilities and longstanding campaigning. (AKA: ‘Mum is known to the trust’).
  • LB was such a funny and entertaining young man, staff forgot he was a patient and treated him as a part of the team.
  • There was no monitoring of my social media activity.

There is a straightforward set of principles guiding public office holders. The Nolan Principles.

Nolan psCracking set of principles. For those serving the public. Both of which Sloven seem to be unaware of. Makes me wonder if the wrong Nolan(s) are filling the Sloven corridors. With this bunch, anything is possible.

Background Briefing on mother’s blog

Just when you think you’ve waded through the worst of the shite, another FOI request pings in. [From the CCG, not from Sloven]. This one includes the Background Briefing on mother’s blog.  Written the day after the day after LB died. And yet they have not 16 months on disciplined staff.

Remembering INQUEST being in touch that day to tell us we needed to act fast…and our complete shock/disbelief at this advice…

And Simon Waugh, Board Chair, telling me categorically last week there was no surveillance…

Here it is. No words really. Well other than you complete fucking self protecting defensive shoddy shitty lying scum-of-the-world bastards. With no commas.

And the blog was inspired by family life with kid who sat outside the box and taught us so much. Not professional interests and photography.

He died.
Blog briefing

It’s worth clicking on the pingbacks included in the comments below to read other thoughts about this latest development. Some interesting reflections on the ethics of surveillance, data protection issues and potential human rights breaches.

State of play

Nearly 16 months now since LB died. 16 long months. Nothing’s happened really in terms of change or accountability. The preventable death of a fit and healthy young man in the ‘care’ of the state. In an NHS unit. In the UK. In the 21st century. A young man who was victim of a system that simply doesn’t recognise learning disabled people as human. Can you imagine?

LB’s death has crushed our lives. The damage caused by 16 months of fighting, campaigning and raging is unknown yet. But given I feel pretty shit on a daily basis, probably substantial. Standing up to an NHS trust that bullies, deceives and demonstrates complete disrespect/disregard for us, is pretty relentless. The Sloves throw money at reputation repair and focus on protecting staff (a selective protection given a staff comment here). The experience, for us (an irrelevant, irkesome family), is the equivalent of a daily battering. An experience documented by other parents like James Titcombe, Anne DixonRosi Reed and siblings like @waketheworld. How can this be?

So where are we at? In no particular order, as always:

    • One staff member so far is being investigated by their professional body after a referral we made. Sloven staff disciplinary proceedings are like a stuck record; continually finishing in the ‘next few weeks’ or ‘ongoing’.  Shameful, shameful delay and prevarication. The Verita report makes clear individual staff failings. It should not have been our responsibility to do this.
LB 1 million

CEO, Sloven Health, 24.2.14

  • The Death Review is out to tender and will take 4 months.
  • The police investigation is ongoing.
  • The second review into LB’s death, covering transition, mental capacity, restraint, why he went into the unit and broader governance issues, is underway by Verita. Due to be completed early next year.
  • The pre-inquest review meeting is on November 25th.
  • The Slade House site is shut to patients. A problematic silence about what will happen to this prime chunk of land continues. And what is happening to people who would have been admitted to the units there. Nothing like allegedly sweeping in to take over known problematic provision in a different county, allowing it to worsen (till something serious happens), closing it and flogging the land. Nope. Nothing like it.
  • On a brighter note… the #LBBill is going at a pace that Sloven should take lessons from (no vimeo in sight). The easy read version of the draft bill is being produced and will be blasted out for discussion in a week or so. Complete energy, commitment and passion.
  • The LB Fighting Fund total so far, after remarkable efforts is £24, 267.77. Wow. Wow. Just wow. So many people, many of whom we’ve never met and who never met LB, have contributed to this amount. Just brilliant.

We’re heartened by the remarkable solidarity #justiceforLB demonstrates. We ain’t got a vimeo budget but there are countless people willing to step up and do all sorts at the drop of a hat.

We’re also fucking delighted that our quirky dude, who loved buses and laughter, seems to have touched, and even impacted on, people’s lives. What a legend. LB bus museum

Ye olde Faculty Psychiatry of Intellectual Disability Annual Conference

Apologies for such a long, cumbersome post title. Psychiatry is one of those disciplines that seems to have an entrenched need to bolster its armoury in weighty words because it ain’t really clear what it does. Their learning disability conference… in Birmingham yesterday and today. (#idconf on twitter).

It all seemed to grind to halt on social media when the panel of Alan Rosenbach, Dominic Slowie, Gavin Harding, ‘A Roy and SMcClinton’ took to the stage this afternoon. A mild twitter fanfare. And then tumbleweed.

@psychiatryofid limped on with less enthusiastic tweeting. (“Fewer members in the audience after lunch, but some strongly-held views #idconf”).

And then bailed out.

What unpopular and controversial statements could Alan Rosenbach have possibly made?

These uncontroversial and sensible statements apparently:


I agree with these points and the sentiment underpinning Alan R’s response. And applaud him – and other panel members who may have spoken up but were twitter censored – for making them.

Though I do wonder why psychiatrists hold this power over learning disabled people (a wonder reinforced by the #idconf twitter feed).

Our experience of psychiatrists in the six months before LB died (he died???) was lamentable (no words really) and the story of Lisa (detailed in the 3 Lives Report) continues to send chills down my spine.

I’m left wondering what ‘ID psychiatry’ does, apart from  things like measuring digit span and concluding “understanding behavioural phenotypes has huge clinical and social implications.”

Maybe there needs to be a bit more of a radical rethink about ‘who is responsible for whom’. And what this actually means in practice.

The Death Review

Justicequilt-2Had a discussion with Rich earlier about calling this post the ‘Death Review’. Or the ‘Review of Deaths’. One of those random  ‘eeek.. should we dress death up in something a bit less in your face’ type chats. But, on balance, gonna stick with the Death Review. Because that’s what it is.

We’ve had #deathbyindifference. The terrible findings of the Confidential Inquiry into the Premature Deaths of Learning Disabled People (CIPOLD). We know learning disabled people die prematurely. We know LB died prematurely [he died??] We know Sloven Health badged his death ‘natural causes’ before the findings of the postmortem were released. We know another patient died of cancer days after LB. A patient who probably didn’t receive the kind of palliative care other patients anticipate receiving.

Barbaric, pretty unspeakable, type death stuff.

The #justiceforLB campaign aims (bit of a thrown together document with hindsight but we’re rolling with it) – The Connor Manifesto – include a request for an independent investigation into other deaths that occurred in Sloven learning disability and mental health provision. A request agreed and actioned by the Real David Nicholson before his departure from the pastures of NHS England.

The scope for this work has now been produced and is out for tender. The work is not about pursuing Sloven blood. It’s about ultimately trying to identify, understand and remedy systemic failings across health and social care. A thorough, committed and considered review of something that should concern everyone. As the specification states; this work will further ‘represent an early implementation of recent CIPOLD proposals’ and ‘feed in to the Equalities and Human Rights Commission Inquiry into the non-natural deaths of people with mental health conditions in state detention’.

This is pretty damn cool in the circumstances. Good for David Nicholson and NHS England who seem to be committed to making effective change for learning disabled people.

Here in the Justice Shed we’re giving this a half tick on our flip chart. Unlike the higher levels of Sloven Health, we ain’t swayed by talk. We want to see the walk. But we’re cautiously optimistic.

Simply not good enough

A quickie post today. Here’s our response to the Sloven Board Chair’s response to our original questions. Phew. What a plinking too and fro. (Not eased at all by speaking on the phone last week). Here’s the CEO’s original response (health warning attached to this number… not a pretty read).

Why am I weighing the blog down with such durge? Because a complete focus on self protection, disregard for grieving families and extraordinary incompetence (at best) exhibited by an NHS Foundation Trust should be a matter of public interest.

For those of you who would rather poke your eyeballs out with a sharp stick and fill your boots with raw chilli, here’s a beautiful photo of LB and classmates at school a few years ago.
LB (2)

Thanks to Graham Shaw for his contribution to this response… one of so many people pitching in because it simply ain’t good enough.

The inquest

Received the pre-inquest review meeting (Nov 25th) paperwork from the coroner’s office this morning. (Sob). Thought it would be useful to outline the process here. (This is my sloppy version. For superb information the INQUEST Handbook is your baby.)

The inquest establishes who and where, when and how they died.  An inquest is held when the cause of death is unnatural or uncertain. There are bog standard inquests and article 2 (of the European Convention of Human Rights) inquests. The latter happen when there’s a question mark over state failure to protect someone’s right to life. Article 2 inquests are more in-depth and can involve a jury. Juries are required when someone dies in state ‘custody’.

The inquest isn’t about blaming people but the coroner can issue a critical verdict. Article 2 inquests can lead to narrative verdicts which expose problems or mistakes made.  A rule 43 report is where the coroner writes to the relevant person/ authority who has power to take action to prevent further deaths. Getting a rule 43 report is a chunky old dent in the reputation of an organisation (basically flagging up their shiteness publicly) and should lead to action.

When things are complicated pre-inquest meetings are held to thrash out the scope of the inquest (type, how wide a focus on what happened, whether there will be a jury and what witnesses to call, etc).

Phew. Think that’s pretty much it. Some other snippets… The coroner makes all these decisions. Inquests are public events. LB’s inquest can’t happen until the police investigations have finished. Sloven will have a legal team present defending them at the taxpayers expense. We have to fund our own legal costs (around £25,000) which thanks to  legendary efforts by the great British (and further afield) public we’ve pretty much raised now. This is bloody brilliant. Though so wrong.