Need, night and utter shite

Yesterday Mark Neary flagged up concern about shared overnight care in warehouse type facilities. Responses to his post can be read at the #LBBill facebook page.

To summarise, it sounds like a cheap gig is being created through the sharing of ‘night’ care by local authorities/providers. Groups of people who are supposed to have support workers can be put to bed sharpish of an evening, leaving one support worker and ‘assistive technology’ on the nightshift (9pm-7am). Assistive technology can be alarmed doors to alert the (dozy TV watching?) night shift herb that an inmate is on the move. (This reminds me a little bit of the experience of my mate’s son.) Strikes me a bit dodgy that this technology can be increasingly (without question) used to surveil, monitor and constrain the movements of learning disabled people to reduce costs/workloads, while any mention of surveillance equipment to protect people from abuse is shot down in a fury of privacy arguments. (Bit of an aside, but I’m still flummoxed as to why we’re still banging on about post-Winterbourne when so many other abuses have happened since and LB died..(he died?) Is it the power of video footage or just another containment exercise?)

Most of us have some say in when we decide to watch the tv, have some nosh, go out, hang out or go to bed. It’s, er, part of being human. Bedding people down by 9pm (and probably much earlier in practice – again, see mate’s story above) for cost and containment reasons is surely breaching their human rights? And goes hand in hand with the shutting down (or more accurately, never opening up) of any sniff of opportunity, aspiration and imagination.

With LB’s death, the sledgehammer of fear no longer hangs over us. We no longer have to worry about how he will lead a (most optimistic scenario) basic life in the context of poor support, budgets cuts and a system which doesn’t recognise the humanity of people like him. And that terrible, terrible fear of what will happen to him when we ain’t around anymore. The worst thing imaginable has happened. In a context that will never ever make any sense to us.

I’m left now, outside this circle of fear, wondering what the fuck is going on? Why are we discussing proposed changes post this/post the other when the beacon that is independent supported living seems to be morphing into a mechanism for managing people on the cheap? An update today on the Bubb report (sigh) talks about new buildings and a (sinister) skills academy. No doubt with hefty contracts for state of the art assistive technology. The potential for this technology to replace the human in the context of learning disability provision is enormous. And menacing. Social interaction (in a diverse range of forms) is central to being human. Removing that from an already socially impoverished group has terrible implications.

I can’t help seeing a future where people reside in the community with empty lives, increasingly monitored by technology. With cost as the central motivation for stripping away their humanity even further.

Anyone know when person centred dropped off the table?


This is what everyday life looks like for many people. How have we got it so wrong?

Sloven sunday and an Indian feast

I spent the weekend cooking Sunday lunch. Bit unusual for me. And a bit of a mixed Indian feast. Tricky if you don’t eat meat to gauge flavours in a lamb spectacular (Nigella’s Indian Feast). The lamb curry was as tough as old boots last night according to sniffy Rich. This morning I got it out the fridge, tried to ignore the obvious rubberiness of the meat and got on with the rest of the feast; (off piste after mutter paneer with my legendary dahl (it really is and I ain’t no cook) and Madjur Jaffrey’s  potatoes with mustard seeds/cumin and stir fried cauliflower. At one point I thought about googling ‘how to soften up rubbery old lamb’ but Nigella warned this might happen and said an overnighter in the sauce would ease the troubled meat.

She was right apparently. Rich and Rosie tucked in gamely. Rich had a painted on smile throughout the meal (my cooking is often the source of some tense exchanges) but they said it was great and they were looking forward to eating it for the next ten years. (I went more for Indian wedding feast than bog standard feast).

Anyway. After a kip, I hit twitter and discovered that Sloven are celebrating being shortlisted for the Nursing Times 2014 award for the health and wellbeing of their staff. Along with pics of the Sloven senior team celebrating this development.

I don’t know. I know the world shouldn’t stop because our dude died. I know Sloven have around 9000 staff many of whom are probably ace. But seeing the CEO ligging about celebrating what is a meaningless, commercial (short list t-shirt?) enterprise while we’re still waiting for fairly basic answers (like, ironically, the outcome of staff disciplinary actions) is pretty rubbish. Leaving a young, healthy dude to drown in the bath and then spitting his family out in a series of obstructive, deceitful, bullying and delaying actions, is off the scale of what the NHS is (or should be).

I wondered if an overnight stint in some sort of sauce could ease this troubled bunch. What it would be like if there was a recipe book or manual somewhere that says ‘be aware that the Trust might well act like complete gobshites after the death of your beloved child/partner/mother/sister… But don’t worry. You don’t need to do anything. Just leave it with us. By tomorrow, the rubberiness will be gone.’

Wow. Wouldn’t that be something?

Sadly, there is no Nigella in this context. There is no sauce. No overnight in the fridge. None of the obvious suspects – ministers, Monitor, NHS England, CQC, the HSE or, as yet to join the party, the Health Ombudsman – seem to have de-rubbering magic.

The Sloven party continues.

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