Category Archives: Oxfordshire County Council

Hoovering stuff and traces…

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Having a long, very overdue, clear out. It’s an odd one. Bits of LB stuff under, or in, so many piles, boxes, drawers. Tugs, wrenches and memories from the past interrupt the work of sorting. Pulling out one bookshelf reveals 10-15 years or so of a thick fluff. [Sorry]. A strangely soft, dark grey, uneven terrain. Somehow and randomly coating the top half of the skirting board. Sort of gross. But bits of LB. Of Chunky Stan. Of all of us…

It was gone in seconds with the hoover. Traces disappeared.

Odd photos and pictures have turned up. I don’t know who’s with LB in this prom photo (now on the fridge). It’s a school pic. And I’ve not deciphered his film announcement below. The cast includes Dan, his beloved dentist, and Tom, who may be Tom Chaplin from Keane or bro Tom. Depending on when it was produced. He’s rubbed out some of the drawing which was unusual. Or maybe I’m trying to wring too much out of these drops of magic. A way of being with him again. Fleetingly.

LB stars and directs, of course. His casual confidence on display in both pictures.

I smile, cry, chuckle, rage and feel enormous and unchanging love. I bloody love that boy.fullsizerender-15

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Humanity, value, love and sunshine…

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Today, as part of the International Day of Persons with Disabilities, Learning Disability England and Spanish friends held an event in Aviles, Northern Spain, celebrating #JusticeforLB and all those who have died through neglect and indifference. Stitching, artwork, music, dancing, fun and so much more.

Just brilliance…

I felt a right old pang seeing the #JusticeforLB bus/quilt in twitter pics. And reading the shock, outrage, sense and warmth expressed by local kids, self advocacy groups and others…

Valued members of society. Blimey. ‘Reach for the stars’ type aspirations that seem to firmly remain the stuff of dreams here. Despite the continued and brilliant efforts of some/many.

Still. We gotta recognise steps made and there have been some. First, the General Medical Council (GMC). Having proceeded at a snails pace (over 2.5 years so far) in the investigation of Dr M, we were told we’d hear the case examiner decision this week. Sitting at my desk earlier [grey sky, gloominess and an all to0 familiar feeling of delay dread] I steeled myself for another weekend without news.

Then an early afternoon email. Dr M is being referred to a tribunal hearing.

A few hours later, a comprehensive (and spontaneous) update from the Health and Safety Executive (HSE) beautifully headed ‘Connor’.

If you’re embroiled in a serious investigation involving a preventable death [howl], your priorities may well be on the meticulous steps involved in evidence collation/examination. Keeping families informed may seem a less relevant, smaller, almost inconsequential part of the process.

It ain’t.

Keeping families informed demonstrates:

that beyond loved children/sisters/brothers/grandchildren/nephews/nieces/friends are valued.

serious consideration and scrutiny of what’s happened, allowing/enabling slightly easier rest in a harrowing (possibly lifelong) space.

a basic, deeply warming, and too often missed, humanity.

Thank you. To the GMC, HSE and ongoing Spanish based magic. For shining light and sunshine on the way forward.

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You can join, contribute to and keep up with Learning Disability England for £12 a year.  

 

 

The curious incident of the earlier death in the bath

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In June 2006, HC, 57, died unexpectedly in the same bath that LB died in. Days after two ECT treatments he was unable to consent to. This emerged during LB’s inquest in October 2015. The coroner, who was clearly surprised to hear about the earlier death requested statements from the key three people involved in HC’s death.

  • The student nurse present in the bathroom

Once I had H supported I managed to pull my alarm, whilst at the same time shouting for assistance. At that point a member of nursing staff entered the bathroom, it was a female member of staff but I cannot recall who it was, simply due to how long ago this incident occurred. I can however recall that [nursing manager] followed that female in to the bathroom. It was approximately 10-15 seconds from H starting to have a seizure to other staff members joining me in the bathroom. By the time they arrived the water was drained and H was still in the bath and [nursing manager] told me to leave the room, which I promptly did. I understand that he did this purely because of my age and experience and he felt it was best to be away from what was happening to H. I did not see what happened next and never saw H again.

  • The nursing manager 

At the time of the incident I know I was not on the Unit.

Later in his statement he says:

I am not sure if I arrived there before Dr J or after but she went into the bathroom and assisted in trying to revive patient. I also cannot recall whether paramedics were already present when I arrived at the ward or whether they arrived after.

  • 3. Dr J (who phoned me the day LB died)

As the attending doctor, I pronounced HC dead.

Later in her statement she says:

On 29 June 2006, I received a phone call from the HM Coroner’s Office asking me if I was prepared to complete and signed the Part 1 of HC’s Death Certificate as I was the attending doctor at the time of his death. They called me again after 15 minutes and informed me that the HM Coroner was not going to ask for a postmortem examination and open an inquest. They informed me that HM Coroner would sign the Part II of the Death Certificate.

The 2014 Sloven ‘investigation’

Another Sloven psychiatrist was tasked with finding out more about HC’s death in 2014. He wrote to the Sloven Clinical Director on March 25 stating:

[Dr J] confirmed that there had been a death some years before Dr M’s appointment. [Dr J] relayed that the circumstances were different in some respects to the epilepsy related death last summer, but similar in that an inpatient on STATT had a seizure in the bath. An attempt at resus followed but it was complicated by the difficulty staff had extricating the man from the bath. He died soon after.

On May 13, the Sloven ‘inquiry’ concluded:

As this was an unexpected death of an NHS inpatient it was reported as a SIRI. There is no evidence of an RCA being undertaken. The Coroner had pronounced the death as natural causes.

This is how you erase a life and a death in full view. Particular lives and deaths. Those that don’t count.

The CQC, Ford escorts and failings

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Oh dear. Andrea Sutcliffe, Chief Inspector of Adult Social Care at the Care Quality Commission, has written a blog that makes my eyes repeatedly blink. And my brain slowly and repeatedly turn and churn. Chucking me back to days of car sickness and towel caught vomit on the back seat of a Ford escort. Here’s a walk through…

Writing about the Panorama programme shown this week documenting abuse at a residential home run by the Morleigh Group. [I’ve not watched the programme. I need to develop guts of steel to do so.] Sutcliffe is both defensive and distancing in her ramblings. 

She kicks off in the first paragraph with the statement “We warned [in a report] that adult social care is approaching a tipping point…” Mmm. A better start, given the content of the Panorama programme, might have been something along the lines of “I’m horrified that such abuse continues to happen in care provision in the UK, despite our continued efforts… We clearly need to do better.”

And continues: “The Panorama footage was not shared with the CQC in advance so I watched like everyone else.”

Blimey. Not sure what the point of this statement is but it doesn’t half ring some serious ‘queen of the land’ bells. A moment or two of self reflection (or a good mate to pull you up on these developing tendencies) might be in order… 

Sutcliffe found that “two moments in particular made me despair”.

Phew. It wasn’t that bad. Only two moments. Allowing reference to the mum test.

“That could have been your mum or mine…”

This was followed by a remarkably weak defence of CQC actions around the Morleigh Group:

“these are services we have been worried about for some time; we had kept them under close scrutiny, inspected regularly and set out what they needed to do to improve through our reports and enforcement action”.

‘Worrying about’ services you know to be failing really ain’t a robust defence. And, clearly, close scrutiny and regular inspections aren’t working. These are people’s lives. A fact that an entire gamut of senior NHS bods apparently still do not get. I ‘worry’ about getting to a meeting on time. About meeting funding deadlines. Not about people (residents) being brutalised.

There’s a muddled and confusing tale of inspections before and after receiving info from Panorama and the (necessary) identifying of “a serious decline in quality”. The CQC never at fault. Failing services brought to public attention by the actions of public and/or journalists have typically ‘just declined’ between news breaking and the previous inspection. Removing any need for scrutiny of the inspection process and what might be missing in terms of identifying failing practice the first time round. Before people are brutalised. Or worse. 

The CQC role section is a cracker. Beginning with unqualified condemnation of the Morleigh Group. Of course. The responsibility lies with them. 

cqc-roleThen the bizarre statement ‘But it is not unnatural when dreadful things happen in the sector’. ‘Unnatural’?  Eh? How far have senior CQC staff become detached from reality?

The following paragraph is also deeply concerning.

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Setting clear expectations? They were kept under close scrutiny? Sigh. The Morleigh Group failed. The CQC failed. There is no wriggle room. Bleating about working hard while failings continue is deeply offensive (and makes utter mockery of the mum test).

Sutcliffe continues to dig a deeper hole. Including an extract from a ‘fairy tale’ letter from a punter which rings even louder alarm bells about CQC processes.

cqc3‘I think I should give you a resident’s viewpoint…’ ‘Recovering from the shock’? ‘Right the wrongs here… ‘ Eh? Really? I’m trying and failing to imagine the concerned ‘resident’, sitting in her bedroom, pen poised, reflecting on how much better life is now staff no longer do ‘wrongs’ to her and other ‘residents’. Nah. I can’t.

The overall message of this ill judged post: it wasn’t the Chief Inspector of Adult Social Care or her CQC kingdom what done it. The failings lie firmly with the provider. [And we all know, sadly, they ain’t an outlier.]

Writing what’s happened…

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I’m writing a book. I know. A book. Lofty aspirations. I can barely read one these days. I’m determined to write a book. I’ve never written a book. I write all the time. I vomit out blog posts. I now struggle to write academic papers.

The process of writing this book is generating rage beyond rage. So much so fucking wrong. I’m beginning to reflect more clearly, three and a half years later, on the broader acceptance of the circulating shite. My initial rage at reading the brutal content of briefings, email exchanges and reports is shifting to those who read rather than those who write this content. And say nothing.

Those who received the Background Briefing of Mother’s Blog in their inbox on July 5 2013. A day after LB drowned. Can you imagine? And sucked it up. Those who received the ‘internal’ review‘ by Oxfordshire County Council two weeks before we’d seen sight or smell of the stench of this secret and tawdry investigation. A report chucked into my inbox without warning one Monday morning by an Oxfordshire County Council Social Care Director, strangely off sick for the rest of that day.

Could you try to step outside the smug, judgemental, self serving space you typically enjoy. And challenge this shit? Keep your eye on the human.

It may make you feel better about yourselves. And what you do.

Or maybe not.

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Conflict negotiation and Trump stickers

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I’m in a space of Trump denial. In a 4.5 star hotel booked for €120 for four nights in Santa Cruz for a work gig. An outside lift reminiscent of The Towering Inferno. Loo roll with a dark blue sticker (figure with upraised arms) on the end sheet. This figure appears variously on a cocktail stirring stick (I think) and other stuff in the room.

fullsizerender-3A Trump like figure. Directing me to the start of a loo roll/tug ritual I’ve mastered since I was a tot. There are no cocktails.

On the plane I had an aisle seat. The woman by the window was a conflict negotiator. With no one between us we bonded over her well worn walking boots and my dusty trail shoes. She trumped the #CaminoLB with 15 or so years of walking different trails/adventures.

We totally owned that middle seat as she quietly reassured me about the robustness, independence and power of the Health and Safety Executive. Apparently, being formally interviewed by the HSE is a deeply, serious step. I was reminded of the clear and sensible info given by the police back in the day.

“This isn’t your conflict any longer…” she said.

Just imagine.

Flight of the Camino

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Not long to go now before we set off on the CaminoLB. The route is here (it’s a bit anarchic organic and loosely formed). What we know so far: George Julian, John Williams, Dave Griffiths and I (me?) are setting off on Tuesday evening on the 24 hour ferry from Portsmouth to Santander. With the #JusticeforLB quilt and bus. Postcards of Awesome, the #JusticeforLB flag and anything else we can tuck in our pockets and socks.

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We hand the booty (other than the bus and the flag if I can find it) over to Alicia Wood in Santander in advance of the #JusticeforLB exhibition planned for 2 Dec. We start walking with the bus first thing Oct 27 with a cheeky 37 miles to cover in the first two days. Luckily John and Dave are doing those two days. Two comedians who are planning to train by doing a few laps of the deck on the ferry. John has Body Glide anti-chafe cream and Compeed. Dave will be wearing his crown.

Various people will join us along the route. With a build up across the final three days when five people from My Life My Choice (including Dawn Wiltshire, Paul Scarrott and Shaun Picken), Rosie Tozer, who is walking in memory of her son, Danny, and Ruth Glynn Owen join us. Paul points out that it may be the first time learning disabled people have done anything like it. I think it probably is. Demonstrating the limitations of the big charity guns – Mencap, Scope, National Autistic Society – who typically manage, orchestrate and erase the talk, enjoyment and involvement of people in a relentless drive for self promotion and self serving nothingness.

We’ll be meeting with Spanish school kids who are making gingerbread figures and local dignitaries during those last three days. Finishing the walk on Nov 3 in Aviles. Dropping the bus off where the exhibition will be held in December.

This afternoon my sis, Agent T (pitching up at Poo next Saturday to walk the remaining walk) and I caught up with packing plans. The weather forecast is spectacular. Coats/waterproofs ditched. Ipads/laptops still up for grabs (well, for me anyway). Various devices for having an unobtrusive piss en route to be tested. I’m running with some £4.99 jobby from Go Outdoors…

With the help of behind the scenes organisation magically sorted by Alicia, Mariana Ortiz and Henry Iles [thank you] we may well have the experience of a lifetime. Laughter, tears and, hopefully, more laughter.

Here’s hoping a few laps of the Brittany Ferry deck on Wednesday will reap rewards.

LB would bloody love it.

[And there’s always time for anyone (er, cough cough, Mencap, Scope, NAS… or whoever) to join us. Why not smash the boundaries and just do summat?]

Jeremy ‘witch Hunt’ and the mother blame

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Was reminded all week about the terrible mother blame that went on across LB’s inquest which was held a year ago. Just a few tasters:

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Unspeakably awful. Again my brain weeps This is the NHS…

Sadly, blaming us has been a consistent theme since LB died. Sloven have sent extraordinary briefing reports to all and sundry blaming us for hacking into staff twitter accounts and trolling. Oxfordshire County did a corporate number with their sordid secret review of me, while one of their commissioners wrote a terrible letter tearing me to shreds (I’ve never met the woman who is apparently deeply christian).

Jeremy Hunt seems to have joined the blame brigade now. He was interviewed by David Fenton in a bizarre piece on BBC South last night. Between them, pushing a ‘witch hunt’ version of events. Fenton even described how Sloven staff are too scared to go out with their Sloven lanyards on for fear of reprisal.

Wow. A witch hunt. An unfounded persecution?

For the record.

  1. There was no ‘witch hunt’ after Percy. 
  2. She didn’t form part of our Connor Manifesto.
  3. We have consistently called for the resignation of several exec/non exec members (Gordon, Spires, Grant, Berryman, Stevens…)
  4. Percy, and the above, should have gone a long time ago.
  5. Our campaign has always focused on the executive board (and LB’s responsible clinician) and not the 9000 or so staff members, many of whom I’m sure do a brilliant job.

I wonder why we are blamed. It’s fucking outrageous. We’ve (collectively) done more to generate awareness of learning disability issues than major charities with enormous budgets. For free. #JusticeforLB has been like a second, full time job over the past 2.5 years. We’ve worked our socks off. We’ve been told we’ve encouraged other families to campaign, and fight for accountability for catastrophic events harming their loved ones. What happened to LB is taught on various undergraduate and post-graduate courses across the UK. School kids have written about him for homework. We’ve generated a shedload of brilliant resources (a justice quilt and other art, blogs, lectures, songs, short films, animations, the LBBill, the first ever inquest tweet archive and loads more… see below). We’ve been consistently reasonable in the circumstances (with liberal swears).

The families and ex-Sloven governors have shown remarkable restraint given everything they’ve endured. Peter Bell is under investigation by the trust (I know) and has declined to sign a gagging order in order to see the draft report of evidence against him (I know). (There was no investigation of Malcolm Berryman’s actions in sharing the Mazars review with his son before publication). John Green has been a model of reasoned, informed, restraint in trying to highlight failures in both Sloven and the wider organisation of the NHS [click here for the abridged version of his report]. Repeated appearances on national and local news by Richard West, Maureen Hickman, the Hartleys, Angie Mote and others have been remarkable for the consistently careful, considered and, again, restrained commentary in the face of such (continued) horror. The behind the scenes email exchanges are reflective and respectful.

It’s a very dangerous precedent if any member of the public who asks questions or seeks lines of accountability from those in power is dismissed as a witch hunter.  Cheap and lazy journalism by the likes of David Fenton, who has failed to have even analysed that which has been put in the public domain by campaigners, is simply wrong. The serial failings that we, and other campaigners and journalists have largely unearthed sit well and truly on the doorsteps of the Sloven board (and some governors), Jim Mackey and the NHS Improvement gang, and, er, Jeremy Hunt.

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An antidote to the above; some #JusticeforLB magic. The middle pouch is an Arabic justice pouch, the bus ipad holder is made from material used to decorate a lorry driver’s cab and the third pouch holds the complete music for Tippett’s ‘A Child of our Time’ to celebrate the performance in memory of LB at Warwick University in June. Brilliance.

Jeff Vader and getting it right

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The day after posting LB ain’t no Han Solo, I received an email update from the Health and Safety Executive (HSE). There’s a pattern here that wouldn’t take the brightest social science analyst to identify. That is, being called out on social media for crapness can* be an effective mechanism to generate some action. This is a good thing. I mean let’s face it, us public ain’t typically served well by ‘official’, pigeon post type PALS and PHSO processes. (These organisations shouldn’t need calling out, of course. That we’ve consistently had to ask for updates over the past 3 years of so is an indication of how poorly families are typically treated.)

The action or response these blog posts or tweets generate varies. We’ve typically had stilted and clipped non updates that I read as woven with “vexatious” whisperings and stabbing needles. Them pesky parent-type stuff.

The latest communication from the HSE included acknowledgement and recognition that we shouldn’t have had to ask for an update. Good. A straightforward sorry, an explanation for the delay in updating and an update. Including notice that the investigation will be continuing beyond the expected end of October deadline. Not so good. But when you get an explanation for this delay it’s slightly easier to suck up. I replied with a brief, Han Solo, related question.

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Today I received a detailed explanation of the complexity of different investigations and differing time frames. This was followed by a second email again acknowledging a failure to keep us updated and some reflection on what the experience must be like for families. These emails have reduced my intense rage about the length of time this investigation is taking. No mean feat. I feel reassured and relieved.

This respect and decency stuff isn’t complicated. Treating people who have been battered into unspeakable spaces by the actions of  health or social care organisations as human, with honesty, care and thoughtfulness shouldn’t be so difficult. Hopefully the other involved strands of the NHS can learn summat from this.

1. Update families regularly (even if there is no news).
2. Try and put yourselves in their shoes. Imagine what it must be like.
 

LB funnily enough wasn’t a Star Wars fan. But he laughed until he cried each time he watched this clip. Which was a lot.

*The effectiveness of this mechanism needs scrutiny. There’s a social media campaign type ‘labour’ that needs unpacking to identify what works and what doesn’t. To help families and campaigners [and NHS and social bods] be more effective.

Weepage, seepage and who cares?

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Dunno why, maybe the anniversary of LB’s inquest, but I’ve been having a weep fest over the past few days. I think about LB all the time. He’s never more than seconds, occasionally minutes and very rarely an hour or so, from my waking mind. I’d got to a state (hate to stage this grief stuff) where I could think about him in different ways. With the occasional, typically left field, gut punching moment. Sparked by a word, a smell, a thought, sound or memory. Moments of near meltdown (I know, the irony), fright, (at the) sheer horror, brutality and worse.

This week I’m back to just crying. Or weeping. Or something else. I don’t know what to call this thing. Maybe weepage. A sheet of tears. There’s no movement. No sort of sobbing and dabbing with a tissue action. No drama. Just moving wetness.

I cried last night re-reading my older sister’s handwritten letter to each Sloven board member. In 2014. Two years ago. Can you imagine?

I cried looking through another pile of photos that have shifted to the surface of home clutter this morning.

I cried sitting at the back of the Oxford to Heathrow coach this afternoon. For pretty much the whole journey. Watching a stream of heavy haulage lorries and coaches. After receiving an update from the General Medical Council. The supplementary expert report is now with Dr M (again). She has two weeks to respond before it goes back to the Case Examiners. Another never ending story.

The Nursing and Midwifery Council investigations? Who knows. Tumbleweed.

We were told, months back, during a meeting with Norman Lamb and the Health and Safety Executive, that some report was with some panel and we would hear something in October. No doubt we will have to chase up any (non) news ourselves.

I think my new tear configuration has (re) emerged because of the utterly shameful banality  of the public sector response to what has happened. A year ago an inquest jury determined that LB died from neglect. He should not have died. He was effectively killed. And nothing has happened. And a recognition that this sustained cruelty can’t continue indefinitely. We (a collective #JusticeforLB we) could not have done more to counter the darkness of the #NHS and social care at its worse, with light. And brilliance. And there is still no accountability.

I wonder where, in the structure of the NHS, effective support and attention exists for brutalised families. Who should know the answer to this. And why the fuck I’m having to ask.

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