Riding the bus to Old Orchard Beach

L1030589 (2)A pitstop in Boston and then the Downeaster Amtrak to Soca for three nights in Old Orchard Beach. Old Orchard Beach on the Maine coast. A place name that oozes nostalgia, honey, nuts and vanilla, quaintness and a slow pace of life.

IMG_3140Outside Soca station (it turned out the train doesn’t stop at Orchard out of season) a frazzled woman with three cute tinies was on the phone to the taxi company.

‘An hour?! I phoned from the train an hour ago and booked it for 3.15pm. Why will it take another hour!”

“There’s only one taxi left in town,” said a woman with a deep voice, sitting on a nearby bench.

This interjection was ignored.

“Well what am I supposed to do? I mean I don’t even know where we are. I phoned an hour ago!”

“Soca,” said the woman on the bench. Delivering deadpan worthy of Greyhound Dave.

I was hoping to get a cab given the unexpected journey  but a) my phone wasn’t charged and b) it wasn’t looking likely given the one cab in town scenario.  At that moment, a jumpity old bus oozing with character pulled up bearing an  ‘Old Orchard Beach’ header. Mmmm.

$1.50 stuffed into a metal box and entry into the world of the Soca/Old Orchard Beach shuttle bus. A bus that has no stops while stopping any where.

I was reminded of Rachel Simon’s book ‘Riding the bus with my sister‘ as I asked the driver about my motel destination. This became the collective concern of pretty much everyone on the bus. Where was my motel and how would I get there? From a bus which seemed to wander around Old Orchard Beach picking up anyone who nodded.

At one point, a passenger got off the bus to pick up a pizza he’d ordered which was being held by someone on a park bench. The driver took the opportunity to get off too. And try and get a bit more local intel about my puzzling destination.

By this stage my iPad was being passed around the bus as people zoomed in on the red flag that identified my motel and the blue dot that marked where we were. Kind of near really. Close enough to walk.

The passenger reappeared with an enormous pizza box. Followed by the driver.

“I think what you need to do is to get off the bus when the blue circle gets close to or at the red flag.”

Everyone nodded or murmured in agreement. Conversation turned to the unexpected closing of Dunkin Donuts.




‘I want to ask you a little about your blog…’

This blog has again loomed large. It did at LB’s inquest and again this week at the ongoing GMC tribunal. Dr Murphy’s respective barristers both presented it as a transgressive space/action that somehow underpinned or fed into what unfolded. It was a malign catalyst for something (I’m not sure what either barrister was trying to argue other than the blog damaged the relationship between some consultant psychiatrists and a patient’s mother).

How social media ‘feedback’ is ‘used’ by health and social care is the subject of considerable research, some of which is happening in our research group. A colleague has been interviewing people who document their health experiences online to explore why they do so.

When I started writing the blog back in May 2011 ‘online patient feedback’ was not a twinkle in my eye and possibly wasn’t even a thing. I wanted to capture the funny stuff that happened in an online diary. I didn’t expect it would be read beyond close family and friends (or even by them). In fact it became quite widely read and a few hundred people started to follow it. The fun focus sadly disappeared towards the end of 2012 and it became an account of trying and failing to get support for LB and subsequently the 107 days he spent in the unit.

This week the blog questions unfolded like this [RP is Dr Murphy’s barrister] :



This was ground already thrashed out during LB’s inquest nearly two years ago now [VM is Dr Murphy talking about a community psychiatrist].


A different view was presented by the Band 6 nurse during his evidence:


I was told a few years ago that a STATT staff member was warned about LB’s imminent admittance four days before he was admitted. I thought this must somehow be wrong. I mean we didn’t know the unit existed until the day we took him there. It was almost in the realm of Mulder and Scully terrain to think that discussions were going on, without us, about a specialist unit we were to find out about from a mate on March 19th.

This week it became apparent that Dr Murphy and other consultant psychiatrists had discussed LB’s potential admittance to STATT (unrecorded discussion) in the weeks before it happened. I spoke with one of the consultants from back in the day earlier today and it turns out that my blog was known about before LB was admitted to STATT. My blog (and my aggression or forthright communication depending on where you sit) generated strong emotions, anxiety, irritation and distrust. There was, as JC said ‘an irrational fear of the blog’.

Social media activity like this was unprecedented and no one who was bothered about it knew how to deal with it. Appeals were made to senior Oxfordshire County Council (OCC) levels to somehow close it down. These were robustly rebutted by a redacted person who, like JC above, suggested that it created an opportunity for engagement.

I appreciate the frank discussion which happened with no notice today. I was also shocked that consultants could be so discommoded by the blogging of a parent, that none of them were able to read, discuss or engage with what was being written in a constructive way. I’d been carefully documenting the complete lack of health and social care support for an increasingly anxious and unwell young man for three or four months by then, or possibly longer.  This is remarkably similar to the Blog Briefing Sloven circulated the day after LB died in which concern focused solely on reputation and professional pride.

I wonder if my writing style somehow added to the fear and distrust. The irreverence and liberal swearing. If I had written a more conventional and ‘polite’ account would it have been better received? I suspect not given the consultant I spoke with denied actually reading it. This was irrational fear.

I’m baffled that not one of these consultants was able to speak to me about their concerns. (Interesting we could have an open discussion today… I assume the toxic mother label is finally shifting as Sloven failings are finally recognised.) I’m deeply horrified we were oblivious to this consternation about the blog when we admitted LB. As the GMC argued this morning, it was Dr Murphy’s responsibility to talk to me about LB’s treatment. It was also the duty of these consultants, surely, to share their concerns with me about my blog?

I suggested to the consultant that the extreme response at the time was generated by the lack of actual challenge to medics by patients or families who are too easily silenced in different ways. The blog created a space of challenge but instead of being used to improve practice, or even engage with and consider the limitations of practice, it was despised and I suspect had an impact on how LB was treated. The veneer of professionalism can be shown to be very thin when ‘transgressional’ activity takes place.

There is some irony that #JusticeforLB is now used in health and social care learning and teaching. The blog also created an unusual contemporaneous record of what happened. The power of the posts that reviled or worried staff before LB died formed part of the evidence at his inquest. The typically disempowered position family members occupy when their testimony is dismissed as ‘anecdote’ differed here. Lowly families aren’t allowed the defence of ‘I did it in my head’ like Dr Murphy has used this week at the tribunal but I had written it down.

There is much to think about, discuss and chew over here in some ways. In other ways there ain’t. Health and social care professionals should be engaging with patients and families in different ways, at different times and in different spaces. They should be encouraging comment and feedback. I hope our experience is already historical and within the ivory tower of unassailable medical practice medics are learning to be more humble and take public accounts of patient experiences as opportunities to better understand the consequences of their actions, or non-actions, and the interaction between the various individuals involved. These accounts should be treasured not vilified.




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.