Loved by mum and mermaids…


Aww… found some school stuff of LB’s I’d not gone through. Such treasure. Including a funky LB Warhol pic (eerily prophetic of Maurizio’s artwork), and a ‘Winter holiday diary’ in which he’d written

Went to the rare breeds farm and let the goats out.

That was so, so blooming hilarious

There was ‘Health and Safety in the Workplace’ work where, in answer to the question ‘Why are these rules important?’, LB replied ‘You need rules to keep safe’.



The heirloom


Alicia Wood drove from Devon late afternoon yesterday. And pitched up at ours, en route to London, with her longtime friend, Maurizio Anzeri, and the artwork he created from a photo of LB. We’d seen, and loved, photos of this picture, which was recently exhibited in Aviles with the #JusticeforLB quilt and other brilliance, but it’s impossible to capture the delicate, intricate, extraordinary (and precision) golden thread, stitching/embroidery on camera. (Sort of ironically.)

It is completely mesmerising.

I can’t put into words what Maurizio creates with his work. He typically works with ‘anonymous’ vintage photos, creating patterns over faces with embroidery thread. He didn’t do this with LB. He sort of wove the magic with him, through him. For him.

One of the saddest things that haunts me (apart from constantly missing LB) is the gradual loosening/distancing of him from the continued unfolding of our lives. I know it’s kind of inevitable. Christ. We can’t keep banging a ‘remember LB’ drum every other minute, despite how much I want to.  I now understand how much each of us who knew (knew of) and loved LB in our various ways, always will. How could we not? And I’m beginning to develop an encouraging, while patchy, engagement with the ‘he’s always with me, in my heart’ type thinking.

Maurizio has produced something that will always prompt/demand questions, interest and fascination among family and friends. He has created an heirloom. And that is truly magical.


Of rage and light…

Overwhelming (and kind of surprising) support in response to remaining angry. For productive rage. That’s cool. Just got to keep up the brilliance stuff too. Luckily this seems to fall over itself. Truly extraordinary… For another week, the #JusticeforLB quilt is on display in Aviles, Northern Spain. With the #JusticeforLB bus and this exquisite piece of artwork by Maurizio Anzero.

No other words.



pillow talk and going viral

So the latest Sloven shitfest hit the fan yesterday. Michael Buchanan continuing to shine a light on the murkiest of murky practices in the dank and musty corridors of Sloven towers. Reading the latest unfolding in a sneaky preview, we thought (again) game over. Stupidly. [LB died, CQC failings, Verita, repeatedly negative coronial determinations, CQC failings, Mazars and further CQC failings…] As the day unfolded, it was back to now familiar and stale feelings of incredulity, disbelief and despair.


Basically (thanks to George Julian for spotting this gem) Katrina Percy apparently set up a programme of leadership development in 2009 which she later ‘follows on’ from as CEO of Sloven. [Note how she switches to ‘I’ when it comes to claiming a bit of glory. Elbowing staff and the ubiquitous ‘we’ out of the way when it comes to relentless and shallow self promotion…]


The story exposed how this ‘investment’ (a cracking misnomer) spiralled 2000% over the original tender amount (from around £300k to £5.365m). For a naff old programme called, er, Going Viral. Oh, and the tender went to an associate of KP; Chris Martin and Talent Works. Cosy. (Apparently, by the end of the current contract CM/Talent Works will receive £9m… £9million). A second associate, Paul Gray, who used to work with KP in pre-Sloven times has earned £602,000 since 2011 without bidding for a contract. Over half a million pounds… Without bidding for a contract.

What is Going Viral?

Good question. We don’t know because Sloven has removed the link to the programme on their website. Shifty move given the weight of the public gaze on what £5m buys. But, in true viral fashion, it has mutated into other cash cows; Senior Viral, Viral Essentials and Gone Viral. [I know].

Handily there are a few vimeos (not) explaining what Senior Viral is. For example:


This includes gems like One of the biggest priorities has to be the number of complex priorities that staff are having to work with” (unknown woman) and, as baffling, So Sloven is big enough almost to be a system its own but I guess we probably need to think about the wider system… (Chris Gordon). It’s taken me about 20 minutes to transcribe two sentences as I kept being overcome with hysterical laughter. £5.365m…


What a painfully awkward situation. £millions spent on a ‘leadership programme’ run by mates so publicly exposed, four (seven) years after inception. In an organisation that continues to fail…

Rest and recuperation

Not surprisingly twitter nearly collapsed under the weight of people tweeting the link to the BBC story throughout the day. Spending cuts, a buckling NHS, ‘post-truth’ politics, etc, etc, make the continuing utter wrongness of Sloven practices sharper and clearer to us herbs.

Later in the afternoon chat (rage) rightly returned to how such sums of money could possibly be necessary for individual trusts to spend (remember there is in existence an NHS Leadership Academy), and what the £5.365 (£9m) could have funded…

pillows 2

Asda pillows. £6 a pop.


If nothing else, that money could have bought 894,167 pillows. Nearly a million pillows.

Apparently NHS Improvement are saying that Sloven have done nothing wrong. Procurement processes have been followed. (Mackey and his bunch of yes bods on fire as ever). I think [hope has long gone] this is the touch paper to finally bring this foul, toxic and beyond brutal charade to a close.

Those who have refused to listen for whatever reasons. Those who have refused to act for whatever reasons. Those who so readily discounted the life of our beautiful, beautiful boy, along with so many others [howl] for whatever reasons. Those who watch and read what is happening and do fuck all for whatever reason…

There must come a tipping point.  A point at which those who have taken the chunky salary, who pretend they are ‘doing their job’, who kid themselves the bigger picture is more important than the odd (numerous) casualties along the way, are forced to admit something is seriously off. A point at which even the family, friends and colleagues of those who can, start to shake them, or more vigorously shake them, to the point at which the tinted specs finally fall off.

The spotlight has been on Sloven for the last few years now. It is obvious to pretty much everyone there are serious failings and a toxic culture at board level. These are reflected in these financial irregularities and the use of the CEO’s mates (over half a £million without bidding for a contract?). (As Roy Lilley said on the Today programme, despite what Sloven say, these aren’t ‘specialist’ tasks that only a small number of organisations can deliver.) The Sloven board are failing patients and bringing themselves and the various NHS organisations around them into disrepute.

It’s time for action.

Watching the consultants

After Tim Smart*, new Sloven board chair, astonishingly announced at Tuesdays meeting that he was commissioning an independent review into Sloven board performance, Chris Hatton totted up the Sloven spend on external consultancy for the last three years. Over £8 million. £8 million… Wow. Given they continue to fail deeply, they really ought to get this dosh refunded. (And stop commissioning consultants.)

Yesterday I received a private and confidential letter from our (least) favourite medical director, the hapless Lesley Stevens.

image (30)

Astonishingly crass but I’d expect nothing less from Sloven, who wouldn’t recognise a bereaved family if they sat in the middle of a funeral service. No thought for the poor buggars receiving this letter, just Sloven, Sloven, Sloven all the way.

Still, at least they are doing some research I thought. And went on to read the credentials of the independent researcher. Ah. They ain’t independent. Or a researcher really. They worked for Hampshire Partnership Trust (predecessor to Sloven)… Sigh.  I emailed to find out more details about the study.  Turns out it isn’t really a study. It’s a ‘service review’. No real details are available other than the (non) independent (non) researcher will ‘interview family members that come forward and to write that up in a report with recommendations on how the Trust improves the process’. Nothing like a bit of rigorous and ethical study. Nope. Nothing like it.

In the absence of a protocol or study design (just extraordinary) I was sent the interview questions. These, too, show a complete lack of understanding of the focus of the ‘study’. Reading them, for the first time in years I appreciated ethics boards. The final question is a cracker:

reviewCan you imagine asking families whose relative has died in Sloven care this question? We ain’t talking about an evaluation of the Royal Mail complaints process FFS. If it had been everything that you would want it to be…?

My jaw is almost permanently clamped shut at the lack of anything remotely human these muppets do these days.

Now, for those mysterious callers and poison pen letter writers among you, I ain’t being picky, vindictive or vexatious here. This is a public sector body squandering millions on shite, continuing to ride roughshod over patients and families while openly failing. It is simply wrong. When I think of the lengths Sloven went to trying to bury the Mazars review, one of the most important, critically analytical and robust studies conducted within the context of the NHS, and yet they will trot out this non ‘study’ as hard evidence of whatever suits them in a few months time… No questions asked. No scrutiny. Nothing.

Not only that, they will very likely have caused additional distress to bereaved families in the process. Another ill thought through and clunky non action plan.

Stay classy, Sloven. As always.

*Not an auspicious start for Mr Smart, sadly. Further details of his bully board behaviour here.

An inhumane battering

I came across this letter sent to some disability activists by an Oxon County Council commissioner again today. Took my breath away. Again. A vicious and ill informed assault. Why?

I’ve been repeatedly vilified as LB’s mum. By senior (white, middle class) people who should not be working anywhere near health and social care. To save their own backs. Their salaries. Their status. Their fakery around their sense of who they are… In a sustained and nasty way.

Just one section of the commissioner’s letter:

OCC Commish letter

[Here’s one of the posts I wrote a week or so before LB died: Am I mainstream now, Mum?  [Howl]]

Have to say, if any OCC or Sloven staff member wants to suggest to my face that I was ‘reluctant to have LB back’ I’ll not be responsible for my actions. I loved that boy more than life itself. We all did. And always will. He was the family rule breaker. The comedian. The gentle and funny guide to different ways of living and being, with a wisdom we didn’t always recognise.

He was a fucking school boy…

Can you begin to imagine what it must be like to read the above extract? From a letter leaked to you a year or so after it’s written and circulated to who? To know you are being bad mouthed in all sorts of NHS/social care circles because some jumped up Trust, whose eyes were bigger than their bellies, were able to feed off a weak Oxon joint commissioning set up. Take over the Ridgeway. Leave it to fester…And your child drowns alone, locked in a bathroom, as an outcome?

Don’t you ever suggest I was reluctant to have LB back. If you do, have the guts to say it to me. Not circulate it in sneaky, sordid communications among NHS/LA corridors and wider. And to anyone who receives such tripe in their everyday work…. You can always call it out, you know. Shake off the stupidity, malaise and laziness and recognise/acknowledge that families aren’t the beasts they are painted to be.

As Tom, 16, said;  “When a mother tells you she’s sure her son’s had a seizure, he has.”

You stupid, self serving, arrogant, barbaric fuckers.




Dirty dealings and the Sloven gravy train

I wrote this filthy lucre post two months ago. About the Slade House site and rumours that Sloven are selling it and heading back down south with millions in their grubby (and negligent) paws. With the naivety (and relentless optimism) that has characterised #JusticeforLB though, we sort of believed Mike Petter’s (written) assurance to My Life My Choice:

“If it is sold by Southern Health, the money will go back into Learning Disability Services in Oxfordshire. If somebody else sells it, they might have a different idea.”

At the time it seemed odd to say ‘if somebody else…’ Mmm.

Naivety and optimism has taken a kicking tonight with the following unravellings and realisations:

  1. DocHawking tonight mentioned sale of the land by a private company; a sneaky bit of asset transfer which absolves Sloven [only in the eyes of devilish monsters] of ‘selling it’ themselves.
  2. Petter has gone.
  3. The Sloven board meeting tomorrow has a secret agenda item Declaration of Surplus Land/Property.

These, in turn, leave us wondering (again):

  • Why did Sloven want to acquire the known to be failing services run by the Ridgeway Partnership in 2012?
  • Why did they do zip all about improving these services or even being visible in Oxfordshire after the contract exchanged hands?
  • How much of a draw was the chunky Slade House site/land next to a recent development for Oxford Brookes student accommodation, within the Oxford ring road?


Oxfordshire has had to endure failing learning disability services for over three years now. It cannot be possible that the resources the county have can be pillaged by a bunch of chancers. (Aided by the stupidity of Oxfordshire County Council and the Clinical Commissioning Group). Nah. No fucking way.


Stevens and the RiO fantastic

Oh dear. Reading the 24 page statement Lesley Stevens, Sloven Consultant Psychiatrist and Medical Director, provided  at LB’s inquest in October 2015 in the light of the leaked document.

It’s the stuff of many posts but to kick off briefly here…

Stevens says:

The report from Verita concluded that Connor’s death was preventable because he should have been subject to “line of sight/sound” observations whilst bathing and would have been had appropriate risk assessments and care plans been in place.


Following the CQC inspection in September 2013, the Trust stopped admitting any further patients to the STATT unit, to enable it to address the failings identified in the CQC’s report.

The same failings identified in the August 2012 review that remained buried until a week or so ago. Steven’s report (drawing on the much used Sloven technique of obliteration through jargon and word length) contains 12 pages about Sloven’s epilepsy map and toolkit. 12 pages. Completely unaware, over two years after LB’s death and all the changes allegedly implemented, that RiO doesn’t allow any recording of epilepsy information, she states:

The health professional undertaking the core assessment must assess the risk using the RIO (a software package) risk assessment form. NICE (2012) guidelines state that the following risks should be assessed as a minimum:

  • Bathing and showering
  • Preparing food, etc, etc

A failing so serious, the coroner flagged this up in his Prevention of Future Death report:

epilepsy shite

So blinking awkward. You’d think any organisation would be rigorous both in the changes made after the preventable death of a patient (typed this laborious phrase so many times now, I’m inclined use ‘killing’ as shorthand) and to check, double check, test and review everything that goes into a report to a coroner. Not the Slovens though. Nah. They just make it up.

Just noise. Public noise. White noise.  HSJ award winning noise. And it apparently doesn’t matter.


What does today mean?

L1018852Version 1

The Care Quality Commission issued a warning notice to Sloven. Ahead of publishing the latest inspection report that took place in January (after publication of the Mazars review and Jezza Hunt’s apparently serious engagement in the House of Commons on December 10th). This warning notice allowed NHS Improvement (previously Monitor (I know.. keep up..) to issue a statement saying they’ve put an additional condition into the Trust’s licence allowing NHS Improvement to make changes at board level.

This now opens a space for some serious action to take place. Particularly given that the still to be published CQC inspection clearly demonstrates continuing failings by Sloven on top of the harrowing findings revealed by the #Mazars review and numerous CQC inspections over nearly three years. That they only made improvements after the warning notice suggests they don’t have a bloody clue.

A laborious and painstaking approach that needs to be followed to allow effective action to happen.

Version 2

Fuck all.

How was today for us?

I came out of a meeting at 1pm. To emails from the CQC and NHS Improvement. Calls from the BBC/ITV. Reading the CQC statement I felt a mix of rage, despair, distress, sadness and more rage. I arranged to go to BBC Oxford late afternoon. ITV Meridian to interview Rich. Updates during the afternoon about an anticipated statement from the Sloven CEO. Work (again) parked for another weekend/evening slot. Meal at mate’s house postponed.

Expectation and anticipation.

Katrina Percy, Mike Petter and the board would have to go. That was obvious. You cannot, given everything that’s happened, keep talking about making changes and doing crap all (or worse). The continuing and clearly evidenced shite was not only damning for Sloven but was also turning a spotlight on the Care Quality Commission and NHS Improvement. How much more non regulation could possibly (not) happen?

She said she wasn’t going to resign. She needed to lead. And then talked about leading in a way that no leader ever would. I spent a couple of hours in BBC Oxford. BBC News, live BBC 24 hour news and BBC Radio Oxford. Live BBC News was streamed in the various spaces I hung out in. LB’s photo constantly in the background.

I came out in early evening sunshine. Into Summertown. The 700 bus came along. I caught it instead of changing buses in Oxford. The bus finished it’s route in the grounds of the JR hospital. Where LB didn’t die.




The unmaking of a scandal and the dove from above

On December 10 2015, the scandalous findings of the Mazars review (into Sloven’s investigation practices when learning disability and mental health service user patients died unexpectedly) were leaked to the BBC. The headlines were horrific. 

Heidi Alexander tabled an urgent question in the House of Commons that morning and serious discussion followed. Deeply serious we thought at the time. A stack of MPs asked important and relevant questions.The full text of the session can be read here. Or you can watch it here.

The Mazars review was ‘profoundly shocking’. The stuff of scandal.

Heidi A nailed the central issue with this statement, love her:

The report raises broader questions about the care of people with learning disabilities or mental health problems. Just because some individuals have less ability to communicate concerns about their care, that must never mean that any less attention is paid to their treatment or their death. That would be the ultimate abrogation of responsibility, and one which should shame us all. The priority now must be to understand how this was allowed to happen, and to ensure this is put right so it can never happen again.

Unmaking the scandal

But the scandal was unmade. Over the course of a few weeks. Urgency dissipated and nothing happened. The Sloven CEO and Board remained untouched despite the report clearly laying the failings at their feet (and despite public appearances that still make my toes wince with awkwardness for just how crap they clearly are).

Why the scandal was unmade is a tricky one. How is a bit easier to unravel. First, there was the cracking timing of the eventual publication of the report. Just as MPs finished for the Christmas break. Literally. This built in a two week or so hiatus allowing some of the intensity of feeling around the findings to ease. This timing was, ostensibly the decision of NHS England. Though given the news this morning that Simon Stevens, NHS England CEO, was leant on by the government over NHS funding, it was quite possibly an order from above. The dove from above.

The dove from above may also explain the utterly unimpressive and ineffective  responses from NHS England, Monitor and the CQC. Giving a goldfish a knife and fork and expecting it to eat, type approaches. Worse than hopeless. Just pointless.

Having met Jeremy Hunt this year and listening to what he said carefully (a courtesy he didn’t extend to us), I re-read the Commons discussion from December this morning and realised how much he didn’t say. I think at the time we were so bowled over he’d sprung into action we didn’t pay proper attention to what he did say.

JezJezza laid out three steps ‘that will help create change in the culture we need’.

  1. Independently assured, Ofsted type style ratings of the quality of care offered to learning disabled people will be published for each of the 209 clinical commissioning group areas.
  2. NHS England have commissioned Bristol university to do an independent study into mortality rates of learning disabled people.
  3. Bruce Keogh will develop a methodology to publishing the number of avoidable deaths per trust. Central to that will be establishing a no-blame reporting culture across the NHS, with people being rewarded, not penalised, for speaking openly and transparently about mistakes.

Not sure where 1. came from but 2. and 3. were already underway before the Mazars findings were circulated. So not a big response by the Secretary of State. The Bristol review stuff is a bit of a waste of time because it’s underfunded and stripped back to the bare bones of research (though I’ve no doubt the team are doing the best job they can within these confines).

In the thirty minute question and answer session that followed this opening statement Jezza repeated human factor speak over and over again. Pretty much ignoring the implications of the review. He only mentioned learning disabled people once. Many of his responses (see below) to various MPs were irrelevant to the Mazars findings given there was no blame culture. No investigations. Nobody cared. People were expected to die early and when they did it was natural causes. No questions asked.

We have to move away from a blame culture in the NHS to a culture in which doctors and nurses are supported if they speak out, which too often is not the case. (to Heidi Alexander)

The hon. Lady has been a practising clinician, so I am sure she will understand that at the heart of this issue is the need to get the culture right. (to Dr Philippa Whitford)

There is an interesting comparison with the airline industry: when it investigate accidents, the vast majority of times, those investigations point to systemic failure. When the NHS investigates clinical accidents, the vast majority of times we point to individual failure. (to Jeremy Lefroy)

I do not see the treatment of people with learning difficulties as distinct from the broader lessons in the Francis report, but if we fail to make progress, I know that the right hon. Gentleman will come back to me, and rightly so. (to Norman Lamb)

I also think, however, that there is a systemic issue in relation to the low reporting of avoidable and preventable deaths and harm, and the failure to develop a true learning culture in the NHS, which in the end is what doctors, nurses and patients all want and need. (to Caroline Nokes)

..if we are going to improve the reporting culture, which in the end is what the report is about, we have to change the fear that many doctors and nurses have that if they are open and transparent about mistakes they have made or seen, they will get dumped on. That is a real worry for many people. Part of this is about creating a supportive culture, so that when people take the brave decision to be open about something that has gone wrong they get the support that they deserve. (to Cheryl Gillan)

When there is a problem, we need a culture where the NHS is totally open and as keen as the families are themselves to understand what happened, whether it could be avoided, and what lessons can be learned. (to Diana Johnson)

We have to recognise that everyone is human, but, uniquely, doctors are in a profession where when they make mistakes, as we all do in our own worlds, people sometimes die. The result of that should not automatically be to say that the doctor was clinically negligent. Ninety-nine times out of 100, we should deduce from the mistake what can be learned to avoid it happening in future. Of course, where there is gross negligence, due process should take its course, but that is only on a minority of occasions. (to Bob Blackman)

He is right about making sure that we get the culture right. It is about creating a more supportive environment for people who do a very, very tough job every day of the week. (to Barry Sheerman)

We need a culture where, when people raise concerns, they are confident they will be listened to. (to Jim Cunningham)

Jezza’s performance was simply a warm up to his recent patient safety global summit gig. Astonishing really. And how he could host a global patient safety summit, bigging up NHS efforts in this arena while ignoring the thorny issue of a group of people consistently dying prematurely in NHS care, without question, without blame and without learning is extraordinary.

But patients aren’t equal of course. Even in the NHS. There’s consistent evidence for this. And some people aren’t really patients.

When we met Jezza he steadfastly refused to engage with or acknowledge that, given the Mazars review revealed that less than 1%* of the deaths of learning disabled people were investigated, urgent scrutiny was needed to look at what was happening and how this was allowed to happen. He repeated human factor stuff. Stepford wife styley.

[*The two deaths that were investigated were LB and, from local intelligence, another patient in the same unit who died a week or so after him so the figure could easily have been 0. 0. 0. 0. 0… 0… ]

Such wilful stubbornness (with sprinklings of stupidity and arrogance) has (ironically) probably consigned a very rare window for proper scrutiny and focus to be turned onto a group of people who die early back to blackout. 

Why? Why has this been allowed to happen? The most scandalous report in the history of learning disability history kicked into the long grass? I dunno. Here’s a few suggestions. A bit of an overlapping jumble as it’s difficult to tease this stuff out.

  1. The extent of eugenic practices that occur under the ‘watchful eye’ of NHS/social care is too big to go near.
  2. Uncovering such practices is feared a) morally (way too uncomfortable and messy to go near); b) economically (potential litigation costs relating to the uncovering of further scandalous practices together with the cost of budgets associated with longer living people are too high).
  3. Premature deaths are ok really or even welcomed because a) certain people ain’t fully human b) are costly, burdensome and unproductive c) the old ‘better off dead’/lives unworthy of life type arguments.
  4. People in positions who can do something about this, and there are some bloody brilliant people who are doing their best, are obstructed from doing their jobs.
  5. Jeremy Hunt sees the HF thing as a calling and has got a bit of a chunky god complex going on. The Mazars review is a pesky complication best ignored.

The dove from above factor.