This is a photo of LB taken 2 days into the last year of his life. His school prom. July 6th 2012. Owen went with him that year. When I found this photo earlier, Tom was delighted. We should get it printed and framed, he enthused. Such a brilliant photo. It is (though this is a screen grab, I can’t find the original right now because of some horrible hiccup with my groaning Mac.) As Tom said, he looks like the guy who the party is organised around. Too blinking cool for school (my cheesy words, not Tom’s). The world at his feet…

That wasn’t a celebratory school prom because LB’s school mate was an inpatient in a children’s unit in Norwich at the time. He’d been there for a few months, had been drugged to the eyeballs and (subsequently) subject to abuse/restraint. He came to the prom with his sister and his mum on a weekend visit home.  We (#ragingmothers) kept our heads down in a side room, trying not to visibly cry when we saw how he’d been affected by his experience/medication.

At the time, LB was, as he looks here, a young dude at the start of his adult life. He occupied a loved and adored place in his extended family, rocked school (and the prom) and was (recognising the constraints around not being able to leave home on his own, cross the road, count to 10 or understand the implications of certain actions) a chilled dude.

Less than a year later he was dead. Shockingly. Preventably. And so far without anyone held accountable. (Or any real change).

LB’s mate is currently experiencing some difficulties having had a good year or so at home with good support. There’s now no in-county provision now STATT has shut. A horrible, sad and howling circularity to LB and his mate’s actual experiences and the government policies including Norman Lamb’s handwringing about abject failure and lack of change, Winterbourne View concordat tentacles and what any of this means to the providers in real terms.

There are some serious questions to be asked about the current closure of STATT and the obligations of the commissioners and local authority to provide effective and good services for people within the county. Basically, if they were able to provide shite provision at extortionate cost in county for however many years, why can’t they provide something good now they know the problems that exist? It really ain’t rocket science.

Or it shouldn’t be dressed up to be.

I received a big package yesterday from the Sloves. The spoils of my Access to Records request. Blimey, I thought. This will take a bit of a read through. As it turned out, it took all of five minutes. The bulk was a copy of the Verita report and one set of board papers (stretching to the typical 200 page length). That left very little.

Now I requested copies of all documentation (reports, letters, emails, etc) in which I was mentioned dating back to when LB went into the unit, including exchanges with other organisations like NHS England, the CQC, Monitor and so on. And following the new NHS emphasis on candour (that is, open, honest and frank engagement), I’d expect a thorough set of documentation.  I’ve had several Sloven emails mentioning me that have been forwarded to me over the past ten months.

Two emails were included. Two.  One the Sloves sent to two people separately, and a response to that email from NHS England.

So more billy bullshite from the now legendary slovenly Trust. Notwithstanding the emails I’d already been forwarded (not included in the Sloven Two), an organisation that’s actively seeking professional advice from different areas (including social media) to manage the trickiness surrounding what’s happened (an ‘unprecedented set of circumstances for the Trust’ according to the Chairman), would clearly have more than two emails mentioning me.

One of the other bits included in the package was the Briefing Note to Monitor. This 3.5 side document includes four separate mentions about wanting to meet with me.

• To date Ms Ryan has declined all invitations to meet with the Trust Chief Executive
• It has been suggested that the Trust is somehow “hiding” from the media on this matter. The truth is very different. The Trust has responded positively to media requests and more importantly it remains keen to engage properly with Connor’s mother, Sara Ryan, but to date she has declined to meet with the Trust.
• For these reasons we should not respond through social media channels but we should continue to seek to engage with Sara Ryan in other ways. We owe it to her to understand that she is currently going through a grieving process and while she may not wish to meet with the Trust now, we still have a duty to engage with her in the future.
• We are pleased that Ms Ryan is meeting with David Nicholson and Jane Cummings – and subject to their agreement – we would invite NHS England to use its best endeavours to persuade Sara Ryan to meet with the Trust.”

This is another example of the completely misplaced focus of Sloven actions, a misplaced focus that filtered down and ultimately led to LB’s death. Instead of concentrating on the care provided and the ship they are running, they seem determined to hound me (and encourage others to hound me) into meeting with them. Why?

And if you’re reading this, KP and team, can you bung the missing documentation my way? Or have I got to make a second ‘official’ request?

Blimey. More shite from the Sloves. My big sis, Agent T, (yep, we’re all discovering skills and talents we never imagined) received a letter from the Sloves today, addressed to her but responding to the grievance of another patient. This is reminiscent of the set of Community Team Meeting minutes, covering all five patients, I received by email when LB was in the unit…

…what-effers. Yadiyawnsville. You tedious, professional (in development), Sloven basher you… 

Yep. I’m happy to assume the label of professional Sloven basher. Because they need bashing. Like other Trusts, I’m sure. (And given Norman Lamb’s completely frank account of the ‘abject failure’ of the Winterbourne View Joint (non) Improvement Plan* yesterday, I’m not sure what other options we have really).

Setting aside LB’s death (through complete indifference and disregard), we’ve had to sit through the Sloven Medical Director talk on local TV news about how the Sloves want to help us (me) move on. Move on. I don’t know how anyone can tell another person they need to ‘move on’ when someone they love beyond life itself, dies. Spoken by a representative of the organisation responsible for his death.

We’ve also listened to Katrina Percy, Chief Exec, talk bullshit about how this ‘isn’t about neglect’. I don’t want to meet KP but I’d like someone to ask her how LB drowning in the bath isn’t about neglect. About how the failings identified at STATT by the CQC, including a lack of therapeutic environment, aren’t about neglect. How ignoring staff concerns about an environment not fit for purpose at Evenlode isn’t about neglect. Etc, etc, etc. And relentless etc.

At the same time, despite (recent) assurances we’ll be kept informed of developments within Sloven Towers around the agonisingly slow process of doing anything in response to LB’s death, we know squit diddly. Agent T knows more about Mrs A’s complaint about her ******* than we know about any development in accountability for what happened to LB.

Then there’s this latest delight. An excel sheet emerging through a Freedom of Information request for all Sloven serious incidents by someone. I’ll work out how to post the full link tomorrow. In relation to LB’s death it states:

Senior management and Divisional Director informed. Police notified and attended, stated that the death appears not to be suspicious. Family notified. Parent has an academic interest in LD services and is known to the Trust – Comms made aware of potential media interest. Safeguarding notified. Incident form and IMA completed. CQC informed.

If you want to know why I’m raging and ranting about Slovenshite, it’s because even at the moment LB died (he died), their focus was on reputation. And has remained so.

* Worth flagging up here that #107days has no budget, no funding and is run solely on goodwill. An exceptional, unique celebration/critique of all stuff learning disability and broader. For free.

The fight for justice for LB is consuming. In a good way for me as it distracts from the darkest of dark thoughts. From pain I can’t go near. At the same time, there are everyday things that need to be done. Outside of emails, developments, campaign developments, bombshells, twists, turns, obstacles and the now familiar billy bullshite to deflect and challenge.

Daily life. Daily life that, for fifteen or so years, consisted of a variable wait every morning for ‘transport’ to pitch up and take LB to school. A wait in which Chunky Stan and Bess kept LB company. Chunky Stan is now blind in both eyes. A development that would have floored us a bit a year ago. When it happened, a few weeks ago, we checked tail wagging capacity, his general demeanour and moved on. He’s a hug/cuddle/sleep kind of dog dude. None of which are affected by a lack of sight. The vet was impressed by his apparently instant adaptation to a non seeing world. A straightforward shift to a different way of being.

What’s missing is LB’s forensic focus and commentary on this development. His concern and desire to repeatedly focus on this change. He’d want reassurance that Stan can’t see any more and to understand why the vet couldn’t stop this happening. He’d probably draw in a few of his favourite characters/people to (repeatedly) comment on Stan’s new situation. Vince from the Mighty Boosh, Smithy, Dirty Harry and the Chief Constable of the Metropolitan Police.

We’ve sort of incorporated Chunky Stan’s sight loss into our everyday lives without much comment. At the same time, there’s a silence that’s cavernous.

With an echo of ‘Is Stan fat Mum?’…

We seem to be skidding along a narrow, rapidly changing, harrowing track these days. Randomly battered by various players/organisations kicking around. Some crappily and/or awkwardly trying to cover their backs.

On an everyday level the experience is a bit like that Wii goalie game that lobs the odd welly instead of a ball. It was a bit of a chuckle when we played it, a few years ago. Dragging LB into Wii world where he engaged on his own terms. [He was shit and didn’t care].

Now the welly to ball ratio is reversed. We get regular kicks in the face. And sometimes miss, or not fully acknowledge, the odd save.

Odd balls? There are some. There is going to be a review into all unexpected deaths in Sloven’s mental health/learning disability provision since 2011. And an independent investigation has been commissioned into what happened to LB. Outside of the focus on the unit. From ‘transition’ to the rest. (If there’s an obvious change to be made here, it’s bury ‘transition’ and ditch the nonsensical division at 18 between ‘adult’ and ‘child’ services…) But the broader investigation is a good development. Not in a ‘Serious Case Review (SCR)/learnings to be made’ way. But because there was/is so much, so wrong. It needs to be made visible.

In timely support of this, further analysis of the Learning Disability Census was published yesterday. One of those documents that makes you think what.the.fuck?

Just one stat;

56.1% of the 3250 inpatients reported in the census had experienced at least one of the following in the 3 months preceding the census date; self harm, seclusion, restraint, assault or accident.

Over half of patients experienced at least one of the above in three months??? How many people experience any of the above in 12 months?

In a life time?

How many people experience any of these in a hospital setting?

I had a phone conversation with someone yesterday who questioned the use of face down restraint at STATT. Apparently ‘supine’ doesn’t mean face down.

‘Oh.’ I said. ‘Doesn’t it?’ 

Brain screech.

Supine? Are we really differentiating between forms of restraint? 

‘Er. Ok, I’ll check out what it actually was’… I said. Gulping. Remaining heart fragments lined up ready for another smashing.

Supine or prone. Face up, face down.

Yeah. As you’d expect. Bastards.

I was struck yesterday about how the death of a young man, Henry Miller, on his gap year in South America made news headlines all day. LB didn’t get into national newspapers until nearly 8 months after he died. Funny really. You’d think a young man left to drown in a bath in an Assessment and Treatment Unit two years after the furore around the abuse uncovered at another Assessment and Treatment Unit, Winterbourne View, would be of national interest. As much as another curly topped young man dying unexpectedly abroad.

Nah. Learning disabled people don’t make headlines. It takes the likes of a Panorama documentary to generate headline news (and then, as we now know, the flames are fuelled by a wedgy of bargain firelighters, fizzling out before you can say ‘Jack squit’).

The label ‘learning disability’ too often strips away any consideration of being human for those who have no experience of being or living with a dude like LB. Including those who work in health and social care with dudes and their families. To below pet status.

A second ‘story’, this week, of three young children found dead in Malden has generated the usual shite coverage attached to these sorts of ‘happenings’ (we know nothing of what happened or why). This coverage again reveals the prejudice and entrenched beliefs of some journalists and editors. Barbara Ellen’s piece today is an example; littered with ‘plight’, ‘suffering’, ‘lone parent’, ‘the disabled’, ‘exhaustion’ and sweeping anecdotal statements.  She ends with a call for others to do the anger and shouting on behalf of these “exhausted families”.

Eurgh.

‘Whatcha moaning about, Moaning Minny?’, some of you may be muttering. ‘She’s saying there ain’t enough resources for families…’

Nope. There ain’t. But couching this story in this way (abject misery, suffering and disempowerment) feeds and sustains a view that having a disabled child is shite. And, by default, the killing of the child/ren is a ‘different sort of killing’ because the ‘disabled child/ren’ (who is/are pushing these families to extremes) ain’t fully human.  It’s simplistic, patronising, and completely ignorant.

I’m off to chat with Pat this week as she’s contributing to #107days. Another older parent, Shirley, left this comment here yesterday. Both women are in their 80’s and have dudes whose life experiences have been consistently challenging because of appalling (or non) provision of services. I don’t know if either would describe their experiences as “less of anger and more of terror”.  And I wouldn’t want to make such a pronouncement in a national newspaper, based on anecdotes from my partner’s work.

I’d guess, from our experience and families we know, it would be more around despair, rage and bafflement that loved dudes (and others) are judged to be less than human. And treated as such. With no recognition or understanding of who they are, as people. And, as an outcome, a complete lack of appropriate support to help them lead fulfilling lives.

Stuffing these experiences into either ‘not worthy of news coverage’ or, in the rare incidents of parents (allegedly) killing their dudes, rushing for the ‘long suffering parent’ (and, by default, denying the children their humanity) angle, is shoddy, careless and ultimately dangerous.

Ok. Here’s the gig. Rich and I (and others I know) are genuinely puzzled/baffled at the mo. This is a bit of a lengthy post but worth a careful read. If you have time, I’d also recommend reading today’s #107days post where Sally Donavon talks about related issues. The question is at the end and it would be great if professionals could try to set aside their bureaucratic goggles and think about this in purely human terms.

First, a summary of issues and actions:

1. Abuse at Winterbourne View exposed in 2011. Action: fancy (concordat) talk, no real action
2. In Oxfordshire, learning disability services provided by Sloven, jointly commissioned by the Clinical Commissioning Group (CCG) and Local Authority (LA), are known to be poor since 2011. Action: ineffectual meithering, cosying down together 
3. LB drowned unsupervised in the bath. Action: (attempted) carpet sweeping
4. Independent report by Verita concludes there was opportunity and knowledge to prevent LB’s death. Action: unclear 
5. Three failed CQC inspections in Oxon. Cherry picking lowlights; denial of basic healthcare standards, patients forced to shower without shower curtains and use a mobile toilet in staff view; illegal deprivations of liberty; lack of basic staff training/therapeutic environment/hygiene/battery in defibrillator/record keeping; out of date medication and oxygen; inadequate staffing levels;  inadequate (dangerous) premises. Action: enforcement warnings
6. Monitor investigate and find various potential breaches of Slovens licence including due diligence around their takeover of the Ridgeway Partnership in November 2012, knowing there were issues and not addressing them. Action: enforcement action

Now I ain’t no rocket scientist but it seems pretty obvious to me that 2. and 6. directly contributed to LB’s death and I’m not sure how the Sloves can repair this breach in due diligence eighteen months on. It also seems glaringly obvious that there’s no proportionate relationship between what happened and what’s been done in the 10 months since LB died.

Yesterday, Sloven Chief Exec (of the Year/Health Services Journal (HSJ) inspirational leader), Katrina Percy, spoke on local television/radio. She seems to have swallowed a brand new chapter from the Sloven jargon manual (probably inspired by Bill Mumford’s new involvement in sorting out Oxon provision) which focuses on a shift to community based services. The problem (now), other than the ‘buildings’ (?), is that ‘the right staff’ are working ‘in the wrong place’ (inpatient rather than community settings). Worryingly, the new line seems to be that all problems will be solved by shutting the units and ditching the patients in the community where staff, who couldn’t give a fuck before, will transform into engaged, informed, motivated and caring workers.

Her response to 2-6 above is; ‘it’s not about [staff] neglecting patients but about not operating in the most modern way that they need to‘. Eh?  Oh my giddy aunt. Not neglect? The most modern way?? What definition of ‘inspirational’ were you using at HSJ Towers??

She insists she wants to listen to the people of Oxon (cue Dambusters again) and hear what they have to say about services…

Climbing back down from the glitzy and glamorous world of awards and inspirational leadership, and sidestepping the whole modern/neglect thorny issue, here’s a tiny glimpse of current life for a few dudes/families in Oxfordshire:

1. One of LB’s classmates has been living outside of Oxfordshire for over two years since he was sectioned at the age of 15. His parents travel to see him every other weekend in Newcastle.
2. A second classmate’s first ‘adult/transition’ appointment with the Sloves a month or so ago was so poorly handled/ill prepared for by a Sloven psychiatrist (who was involved with LB) that his family made an official complaint.
3. The family of a third young man who died in August 2012 have not been given a copy of the Sloven internal investigation into his death. Allegedly it would be too distressing. The inquest into his death has been delayed to allow more evidence to be gathered.

So, what we’d like to genuinely ask the Slovens, the CCG, the local authority, the CQC, NHS England, the Department of Health, Monitor (anyone really) is:

Given 1-6 above, can someone tell us clearly and precisely what would have to happen within health and social care provision to generate a response that is proportionate, swift and meaningful?

Another bad news day for the Sloves. You’d think. This morning the legendary Gman (and team) broke the news on BBC Radio Oxford (available at 1:03ish for seven days) that a third CQC inspection into Sloven learning disability provision in Oxfordshire had failed.

[Warning: the next two paragraphs (in italics) are deeply disturbing.]

The inspectors found the building wasn’t fit for purpose and a patient had nearly died in the seclusion room. The bathroom in the seclusion room was locked because there was a ligature risk with the taps. This meant patients had to use a temporary toilet in full view of staff. (For how long?)  

One dude still managed to tie a ligature round his neck and was found having a seizure which required hospitalisation. This ‘incident’ wasn’t reported to the safeguarding agency because the “situation had been discussed with Oxfordshire Commissioners as to whether it was a SIRI as ‘the person did not sustain any actual harm’”.

The rest of the inspection was reasonably positive as the CQC bod seemed keen to point out on the radio. The Gman, with characteristic crap cutting, instantly responded that’s how it should be…

‘Does Sloven H have a problem?‘ he asked. ‘Er yes‘, answered CQC bod gingerly. Adding that the Sloves were unaware that there was a problem with the building. Bit too apologetic really. Especially as the report states that the Sloves did know and did nothing. Typical of their (non) action since taking over the Ridgeway Partnership with known problems back in November 2012. Not a great model when you’re supposed to be caring for very vulnerable people. Knowing and not doing.

Only a few hours later Monitor (the health service regulator) issued a press release. A press release that’s a lesson in something. Dunno what.

Southern Health NHS Foundation Trust has agreed to urgently implement a series of improvements in the quality of care that it provides and to how it is run. […] Paul Streat, Regional Director at Monitor, said: “The trust has failed to act quickly enough to improve services in Oxfordshire and must get the right processes in place to ensure action is taken to fix problems quickly. The agreement we’ve reached today will see the trust deliver real improvements in its services and will make sure that this continues in the future.”

Astonishing, numbing, nothingness. ‘Have they been hacked?’ I puzzled. Staring at the screen. Thinking about LB. The other dudes who were placed in high risk situations in Piggy Lane and Evenlode. The lack of ‘therapeutic environments’ and right to piss and shit in privacy.

Nope. Over at Sloven Towers, KP speedily bounced a love ball straight back ’em. Ending with;

“I fully understand why Monitor has raised their concerns and I welcome the opportunity to work with them to demonstrate that the issues they have identified are not an ongoing cause for concern.”

If I did my job so badly that (at least) one young person died and a second came seriously close to death, I kind of hope there would be a bit more than “reaching an agreement” around “improving services” with the industry regulator. And I hope I wouldn’t be insensitive enough to wank on about how I welcome the opportunity to work with them. KP, once again with weariness, this really ain’t about you.

Sadly this press release love-in seems to illustrate the stage we’re now at in this long, foul, unspeakable journey.  Pretty much everyone implicated seems to have joined forces to protect each other. Entrenched deflection. Denial. Deceit. Spin. And empty words. Oh, and seemingly unlimited (public) resources to draw upon to avoid any accountability.

Classy. As always.

Rich and I were talking on the bus to town earlier. Rich remarked how there was no ‘loss of potential future’ narrative in any discussion or coverage since LB died.There was no imagined future for LB.  He’s not presented or seen as a young man ‘who hoped to become a mechanic’, ‘hoped to go to university to study x, y or z’  or ‘dreamed of running his own business’… He didn’t have an imagined future unlike many other young people who die unexpectedly.

We’re implicated in this.  I was looking into a social enterprise gig because I strongly thought LB should work. But that effort was half arsed really in retrospect. I don’t think I fully appreciated his potential. I loved him to bits, loved his quirkiness, his special interests, his engagement, artwork and humour. But I don’t think I reaIly believed these talents, skills and abilities translated into ‘mainstream’ life in a meaningful way. I was trying to kickback against the only future that appeared to be open to him; “independent supported living”, whatever that meant, with budget bunfights, variable support and isolation.

Now, sadly, I clearly recognise what he was capable of, his exceptional talents and how much potential he had. The response to #107days underlines this. With support, encouragement and a more flexible society he could (should) have had a range of imagined futures. If we hadn’t been browbeaten into a position of expecting fuck all and dreading worse, we’d have been better placed to help him achieve these.

At the same time, I’ve noticed how spot on the champions from My Life My Choice have been in their response to what happened. They’ve cut through the crap, have no agenda other than to highlight how LB should never have died and tell it like it is.

So much so wrong. And so much blinking right that ain’t recognised.

Customising t-shirts at http://www.propsforward.org/