Category Archives: Oxfordshire County Council

A beautiful boy, a book, a play and an ink pad

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Connor died. He should be alive.

The book

The book I wrote about what happened was launched at Doughty Street Chambers six years ago with a kick ass panel and audience. I wore a red scarfy thing knitted by the mum of one of Connor’s teaching assistants. My Life My Choice members including their President, Michael Edwards, sat in the front row and cheerfully chipped in.

Writing the book was an exercise in witnessing. I’d written this blog for years. Writing joy, love, laughter, critique, commentary (and devastation). The book was a way of trying to make sense of the responses to Connor’s death, documenting the brutality of the processes and bullshit (or worse) families face when someone dies in state ‘care’. It was written before some of these processes ended [they never end].

An ink pad

I was uncomfortable at the thought of being asked to sign copies (what do you write?) and made a stamp to avoid this. The tiny ink pad still works. I didn’t stamp or sign many copies in the end. Rich, Rosie, Will, Owen, Tom and George Julian had complimentary copies. I sent a copy to Michael’s sister down Dorset way. He persuaded the publisher to produce a talking book version at the launch.

The play

Steve Unwin began to talk about a play before lockdown. He loved the book and started work to bring it to the stage. We met in Oxford. There was further discussion, draft scripts, potential news, updates and undates. I approached this in the same way I dealt with the book. As a kind of interested bystander with a stamp and an ink pad. Vaguely surprised when the play was mentioned, passing on updates to family and friends with caveats. This may not happen.

A few months ago Steve shared the most recent version of the script (a corker) and news the play, Laughing Boy, is on next spring at Jermyn Street Theatre followed by a week at Bath. Wow. A meeting was held with Stella Powell-Jones and David Doyle (Artistic Director and Executive Producer) in a London pub to talk about the important stuff.

How to get this right. That was the discussion. With Thai curry.

Earlier this week, the copy and image was shared for comment. The reassurance I felt after the meeting was cemented. The image is inspired by a #JusticeforLB quilt patch and the text spot on.

The announcement was made on Thursday lunchtime. The Lonely Londoners in Feb/March followed by Laughing Boy in April/May. I was at a writing retreat at Gladstone’s Library distracted by the beauty of the mushrooms as details bounced around social media.

So many messages and posts. A buzz of action, excitement and anticipation despite everything else going on. Would it go up North? Highlight of next year! My Life My Choice are bussing to Bath. Brilliant said Norman Lamb. Becca got her clipboard back out to organise the life raft trip to London. Booked. Booked. Booked.

Someone prosaically tweeted, ‘Lots of time to do something remarkable’.

It’s already remarkable. A beautiful boy dismissed in life matters. His quirkiness, love of life and buses, humour, irreverence and courage to stick two fingers up at adversity count.

I’m setting aside my stamp and ink pad. There will be tears. So many tears, alongside laughter, bafflement and kick ass brilliance.

Thank you Steve Unwin.

Tickets are available here with relaxed and captioned performances.

Quest Craven and the end of a decade

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I’ve drafted posts on paper, on this blog and in my head on and off for weeks and months now. And kind of enjoyed not posting them. It feels right. I may revisit some of these ghost posts. Or not. Some (many) are about (malingering) grief. About the intense pain and sadness I feel. And always will. With patches of pretty much happiness. That’s cool. I don’t want to always be Captain Bringdown. I remain in awe of feelings of contentment.

I’ve got a sort of manageable grief gig thing going on that kicks in along my walk to work in St Aldates. A space of enormously wide open sky. Taking in an ever present smorgasbord of coaches outside the Ashmolean. Mentally ticking off the die cast models LB collected while acknowledging post-death models he could only dream of. The road ahead leads to the cemetery.

Tonight I want to write about one atrocity story. Before we leave this decade.

Back in the day I would likely have laid out the pre-story to this. In considerable detail with links, drawings and other illustrations. [This blog with JusticeforLB.org and 107daysofaction produced by George Julian will no doubt provide a weighty and comprehensive account of the utter shite that passes for health and social care for certain people in the 21st century. Ripe pickings for students to unpack in years to come.]

I’ve lost my appetite for up to the minute documenting. For calling out, calling on, demanding, raging and howling at the moon and the stars. Six years on the resounding response in terms of demonstrable action is ‘we really couldn’t give a flying fuck’.

The swears no longer work.

Quest Craven

This is a story about a private provider called Quest Haven who run two ‘care homes’ for learning disabled people in Surrey (amongst other ‘care’ related practices). I strongly urge you to:

  1. Have a graze of the CQC inspection report highlighting the harrowing failings in anything approaching what could be described as ‘care’ in one of the two properties.
  2. Reflect on the longevity of this company (set up in 1997) and the fact that until November 2019 the Directors (three members of the Tagoe family) claimed to be Registered Nurses.
  3. Have a look at the Quest Haven website.
  4. Note that the claimed Registered Nurse status of all three Directors has now been revised to, er, not Registered Nurses. The Directors of this private provider were all faking their credentials.

Apparently the Nursing and Midwifery Council and Care Quality Commission couldn’t give a flying fuck about this fakery. Classy bunches as ever. We have no idea how widespread this practice is and the limp response suggests there is little or no appetite to root it out. Particularly, I suggest, when those receiving the non care are of so little value. Tinned mac n’ cheese on a budget of (an estimated) £3k+ a week is apparently rock and roll.

So, as we enter the third decade of the 21st century the appetite, guts, knowledge and integrity necessary to shift entrenched failings in practice and support remain elusive. Talk is talked. Big salaries are drawn among public and third sector organisation bods. Family members continue to be co-opted and effectively silenced.

Meanwhile in a bungalow in Surrey people continue to be treated like shite by fake nurses who don’t know their care arse from their elbow. Quest Haven rakes in the readies as commissioners across the country remain apparently glad to wash their hands of ‘troublesome people’. A regulatory and commissioning system continuing to choose to look the other way.

Way to go. Way to fucking go. We need a new plan for the next decade. One that does not bolster and help sustain this rot.

The Whorlton Hall disclosures

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My blog is developing a bus theme which would delight a certain cheeky chappy we miss off the planet and to the moon and back. I wrote a CQC related post about the shoddiness of Mencrap provision yesterday evening after a longish gap and then, 24 hours later, comes another CQC related post.

After Panorama exposed brutal and cruel treatment at Whorlton Hall recently, the CQC today published the series of edited reports that begin when Barry Stanley-Wilkinson, a CQC inspector, wrote a report about the provision after an inspection in 2015. He found Whorlton Hall required improvement on all domains inspected. The report was not published until today.

We welcome the disclosure today in the rarely seen spirit of transparency. It offers an insight into an inspection process that should probably be chucked into the nearest skip. Coincidentally there was “a large skip within the hospital car park, which contained debris as well as long planks of wood which had large nails attached” when Barry and team visited.

So today we can trace how a CQC inspector writes a report which goes through layers of review. At each stage meaning is stripped back to bordering on the meaningless, words substituted for more vacuous ones (selected by a ‘word coach’ using a quasi scientific tool). The report then, apparently stripped of the layers of editing (audit trail) bounces to a final review stage which, in the case of this particular report, led to it being punted into the, er, nearest skip.

More evidence was needed apparently though it is not clear where that decision came from in the documents released today. Six months [six months] later, nearly 12 months [12 months…] after Barry’s inspection, Whorlton Hall mysteriously received a good inspection rating. And that was history until the Panorama team went in this year.

So what did Barry’s original report highlight?

  • Environmental risks including the skip and parts of the building in which people couldn’t be observed.
  • Incomplete record keeping (including observations) and lack of risk assessment review.
  • Poor quality reporting of multi disciplinary team meetings.
  • Recordings not legible and no treatment or discharge plans formulated.
  • Out of date medication policies and no rapid tranquillisation policy
  • Lack of plans around sexuality and sexual behaviour and poor take up of annual health checks.
  • Inappropriate staffing levels and poorly trained staff who lacked understanding of the Mental Capacity Act and ways of communicating with people.
  • A low stimulus room used without protocols or procedures.

Basically a cornucopia of potential and chilling human rights abuses which were allowed to flourish for another 4 years. Between the CQC, NHS England, Hancock, ineffectual and careless commissioners, limp processes like Leder and self serving and greedy charities like Mencrap, it really ain’t hard to work out what underpins the stark and devastating disparities in the life outcomes of learning disabled people.

I seriously hope the Human Rights Committee are all over this on Wednesday afternoon.

In case readers need reminding of what living lives we all have a right to live look like, here are Dawn, Gina and Jess enjoying a beer after walking 100kms of the Camino de Santiago last March.

 

 

The full panoply

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A rare post. I’m on leave for a week. At home. Writing what I’m calling ‘book 2’ about families with disabled children (a contracted gig). This has involved sifting back through time, space, context, hisory, stuff. I kind of got stuck revisiting the documentary The Silent Minority made by Nigel Evans in 1981. About St Lawrence’s Hospital, Caterham and Borocourt Hospital near Reading. Long stay institutions for learning disabled children and adults.

We moved near to Borocourt Hospital in 1982.

Sun drenched summers, fun and laughter. Lager and black booze filled evenings and country pub lock-ins. A different terrain to our Southend childhood. Borocourt standing to attention faintly in the background. Carelessly, thoughtlessly ignored. A magnificently austere red brick gothic building. A place that almost bothered me. Borocourt people muttered.

Nigel Evans is someone I wish I’d met. The humanity and humour he captures in this documentary alongside footage that almost demands a trigger warning before viewing is extraordinary. ‘Inmates’ offer warm, heartbreaking and thoughtful commentary:

Perhaps (I dunno, I found it all beyond moving, harrowing and devastating) the breathtaking stomach punch was when staff noticed that Terry Green was trying to move the wheels of the chair he was sitting in but couldn’t quite reach them. They sorted a different sized chair (temporarily) for him.

Evans describes how

After 40 years in bed, 10 years on a bean bag, Terry Green takes his first inching steps towards independence. For decades the full panoply of the medical profession has tripped through this ward and nobody had the wit, the initiative or imagination to give Terry this opportunity. This kind of neglect invites a whole new definition of the phrase ‘mental handicap’.

No wit, initiative or imagination… The full panoply of the medical profession.

I had to google ‘panoply’. It means ‘an impressive collection’. My respect for Evans speaking these words grew exponentially. And, with a bit more digging, I found out he did some fudging in terms of gaining consent for the film (according to the enraged health boards of Surrey and Reading). It was in the public interest he said unapologetically.

It was. And it is. We have a public and unassailable record of the treatment of learning disabled people in the 1980s.

Today further details of the latest (now already dated while still not published) Leder annual review were leaked by the Health Service Journal (@rebeccasmt). The Times did a piece on Sunday (@RosamundUrwin) highlighting the lowlights. The HSJ offered the 12 recommendations with commentary.

The report documents the usual shite. 38% of deaths haven’t been allocated a reviewer, consistently dire premature mortality rates and more. The recommendations are truly grim. And include a call for guidance that ‘learning disabilities’ should never be an acceptable rationale for ‘do not resuscitate’ or used as the underlying or only cause of death on a death certificate. Forty years after Nigel Evans called out the medical profession for its inability to be human.

With unexpectedly fab weather and ‘holiday’ time on my hands I’ve reclaimed a patio area Rich built in the corner of our garden 15 odd years ago. A bit of ivy and other weed/rubbish clearance and I’ve ended up with a small, perfectly formed, shaded outdoor office space to sit and work in. The main tree, a Canadian maple we were gifted as a sapling from a garden across town, has in the intervening years grown to form a canopy of brilliantly bright leaves merging with an overflowing grapevine from next door.

This has distracted me this afternoon. My brain scrambling, jumbling and stumbling over the full panoply, the ‘impressive collection’ of people who still, 40 long years on, think learning disability is a cause of death or a reason not to resuscitate.

And our beautiful, beautiful boy, who spent hours in this garden each summer as the Maple tree slowly grew, one of the many dead. Dead. Not by ‘learning disability’ (you ignorant bastards). Death by the full panoply of the medical and other professions.

Sharks on the rooftops

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I went for a wander round Headington late afternoon earlier. In part to practice taking photos with my new camera and because I remain so blooming upset/agitated by the description of LB in the NMC hearing ‘determination of (un)facts’. How dare a fucking ‘panel’ of a nurse and two lay people who never met LB and have done nothing to try to understand anything about him be so callously disrespectful of who he was.

No doubt they will argue their determination is based on evidence but evidence is not statements like so and so ‘seems to suggest that…’

Distressing, unnecessary and cruel.

In the late afternoon sun I wandered past the Co-op where LB smashed doing the shopping back in the day. Still makes me chuckle. On to Posh Fish, a go-to chippy for 20 years though our visits have dropped to rarely as the kids have grown older. My mum and dad took Rosie, Tom and LB there for some nosh on the day of my viva at Warwick in 2006. Rich and I pitched up later to have a celebratory beer with them. Such a joyful day. Posh Fish rocked. Reach for the stars stuff it seemed at the time.

Sharks on the rooftops.

Then round to the other Headington shark. The one we used to go and look at when the kids were tots. Rosie was convinced for years it had been a fish and chip shop. I think maybe as a way of trying to make sense of an enormous shark apparently falling head first from the sky through the roof of a terraced house.

At the end of the shark road is the funeral home LB was in before his funeral. Well in and out of because of the balls up over his post mortem. Behind the side window is the ‘viewing room’ or chapel of rest. It’s just a room really but a room completely and devastatingly not like any other room.

[For geography nerds, the John Radcliffe Hospital is up the road there on the left.]

As I waited to cross the road directly opposite a coach went passed blocking my view. Oh my…

Angel Executive Travel. No.fucking.way.

This coach passed me on the day of LB’s funeral. Walking in distress and agitation in the park across the road (the same road). A different type/flavour/density? of distress and agitation.

I didn’t know whether to laugh, cry or punch the air.

I’m taking air punching.

At the end of a week in which professional sharks (not our local fun and quirky ones) have once again been circling for blood and behaving like fucking spunktrumpetweeblewarblers we’re not going to let LB’s memory be sullied in a crass, ill-informed and deeply biased report.

On Friday we’re back to London to fight the fucking fight that never, ever seems to end; to try to establish the humanity of our fun, quirky and beautiful children.

Don’t poke the beast…

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The footies on. Somewhere. Everywhere, it’s so damn quiet. Home alone with Bess. Listening to music. Head spinning from so much happening and not happening. LB’s five year death anniversary speedily approaching. The day before NHS 70th birthday celebrations. I feel queasy already. Hunt and NHS England remain silent about the leder review. Bouncing back FOI requests as too expensive. Refusing to comment.

An extraordinary level of engineered wilful disinterest.

Non-disclosure

I put in a Subject Access Request a month ago asking to see Valerie Murphy’s statement for the MPTS hearing. She read my statement. Her barrister commented on it during his illness inducing cross-examination.

The answer came back today:

“I do not believe there is information that is disclosable under the DPA”. Oh. The GMC will however disclose extracts relating to LB if I sign a confidentiality agreement.

Murphy had no such restrictions. She can say whatever she wants about my statement. To whoever she chooses.

And so it continues..

A week ago a bizarre comment was posted on justiceforLB.org:

The answer to George’s question was this:

Spencer and Murphy studied at the same university at the same time.

Oh my.

[Howl].

We know snarky (or worse) and largely unchallenged discussions go on behind the password protected doctors.net (and I’m sure other forums). These started within weeks of LB’s death. Mother (and other) blame has had a remarkably unremitting purchase in health, social care, education circles for decades now. Noted and discussed at length by families. A steely silence (apart from the odd dissenter) from professionals who must recognise this shite for what it is.

These random, unexpected and typically incoherent attacks are pretty hard to endure. Our boy died. He died. You just don’t seem to understand this. He was 18. Can you imagine your child dying a preventable death in the ‘care’ of the NHS?

A beloved and beautiful child. Dying. A preventable death.

Can you begin to imagine?

Why don’t you fucking try to imagine?

 

 

 

 

 

 

 

Dancing around death…

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Ben Morris, the STATT unit manager, was suspended for 12 months today at the beginning of the Nursing and Midwifery Council hearings. He admitted 17 charges and ‘accepted his fitness to practise as a nurse is impaired because of his past, serious misconduct’. I read the consensual panel determination (a 43 page document capturing the charges, admission of guilt and the now typically late to the table remorse) over the weekend.

More pieces added to the map of we’ll never ever know.

Morris offered no explanation as to why he didn’t do the things he should have done (other than ‘working’ beyond his skill set). He didn’t blame anyone.

The shadowy figures of clinical commissioners and Oxfordshire County Council dance around the edges of these documents. Again.

Quality reviews screaming ‘ACT NOW’.

Ignored.

Why the fuck didn’t you do something?

No engagement. No interest. No care.

Hollow, brutal and public erasure of humanity.

#Leder review

 

 

Housecoats, aprons and mucky labour

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Captivated by the women of Galicia along the last section of #CaminoLB.

“Can I take your photo?” I asked pointing at my camera. A few said no. Others stood tall. Looking me in the eye with quiet confidence. There was no artifice or prevarication.

Incredible, beautiful faces.

Lines. Life carvings. Contours of determination, humour, dignity. Resilience. Well earned, authentic resilience.

Glimpses of triumph and more. So many stories.

Housecoats, aprons and mucky labour.

Back to work tomorrow.  It’s been a long five years.


Light and the fatberg ingredients

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L1031904-2

Crumbs. I’m feeling brighter. I’d anticipated a plummet to rock bottom land in the lead up to the Health and Safety Executive (HSE) sentencing hearing next Monday and Tuesday. A month after the MPTS sanction decision for Valerie Murphy. Two years after LB’s two week inquest. Five years to the day we took him to the STATT unit that cold, dark Tuesday evening on March 19 2013 [howl].

Other than the odd trip to London or Oxford I’ve been hanging out in the Justice shed for weeks. Crocheting.

A recognisable blanket of brightly coloured granny squares has emerged (will add a picture in the morning when it’s daylight). Griefcast has become my (late to the party) go to soundtrack. The (sometimes) humorous reflections of death and grief by comedians has been a gentle and soothing backdrop to the wool action.

I feel brighter.

Tom and I did a news interview this morning in advance of next weeks hearing. In our kitchen. The setting for numerous recordings over the last five years.

Doors have since fallen off cupboards and and half arsed drawer fronts carefully propped up. In preparation for the visit I did a bit of cleaning this morning.

“Mum! It smells really funny down here!” shouted Tom while I was upstairs getting out of my crochet uniform of grey tracky bottoms and a worn out old woolly red jumper.

“Ah I chucked a load of bleach down the sink. It might be that!” I replied. Visions of some right old ripe and until now undisturbed fatberg ingredients fighting back in the u-bend.

We ended up talking about five years of campaigning. Five years. Five of Tom’s seven teenage years. Pretty much the first five of Rosie, Will and Owen’s adult years. Half a decade. Half a decade of repeatedly poring over the hideous and distressing details surrounding LB’s death. Over and over and over again.

Of being blamed and vilified. Of persistent fat berg ingredients.

The interview was unexpectedly positive. There are no more nasties to come. No more bundle pages to turn over and ‘go to’.  No more oaths to swear. No more vicious counsels to face. We’re part of the audience for the hearing next week. And Sloven have pleaded guilty.

Tom made a comment at the end of the interview about the style of the campaign; the humour, creativity and fun. He was spot on.We’ve collectively written, blogged, spoken, tweeted, live-tweeted, presented, met, challenged, shouted, scrutinised, counted, drawn, produced, filmed, sung, shared, kayaked, run, walked, danced, travelled, stitched, photographed, baked, drunk, laughed, cried, wept, hugged, raged and laughed more.

Whatever happens next week we’ve done LB and all the other dudes proud.

Light.

L1032421

L1032418

 

 

 

Power, irony and the ‘sorry’ ship…

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‘Sorry’ or an absence of sorry has been a consistent feature of the last few years. We’ve collected a right old rag bag of non-apologies including ‘I’m sorry for any distress you may have felt…’ ‘Please accept my condolences for your loss‘ and ‘I’m sorry if [fill in whatever here]. Last week Valerie Murphy finally ‘found remorse’ and produced an apology for the MPTS panel.

The Murpy effect

At LB’s inquest, one of the barristers, Mr Fortune, offered Murphy the opportunity to say sorry to us when she was giving evidence. An eminently sensible and kind man, he’d obviously helped his client Winnie Betsva come to the decision to do so when she earlier gave evidence. Winnie said sorry. Clearly and unambiguously. Murphy’s non-response lead Fortune to dramatically say “I specifically did not ask we, I addressed the question to you. Dr Murphy please answer.” After further procrastination she stated “It was the right decision. I don’t believe there were failings”. On the inquest recording you can hear the courtroom door slam as I walked out. [I didn’t slam it, it closes loudly.]

Fast forward to yesterday and an email from the GMC. Murphy’s solicitor said she wants to write to us and are we willing to allow the GMC to pass on our home address.

When the ‘sorry’ ship has sailed…

There comes a time when the space to say sorry expires. How long that window remains open will vary but given we went into the MPTS tribunal last August fully expecting and prepared to accept an apology from Murphy four years after LB died it lasts some time.

That ship has sailed now. It sailed for me when instead of saying sorry she allowed her barrister to unnecessarily cross-examine me for nearly two hours.

I had to leave that room too when he told me she was upset. For a brief break before returning to more of the same. While Murphy sat next to him. Feet away.

I’d hazard a guess that Murphy wants to apologise to us now because this absence is repeatedly referred to in the sanction decision. The focus of the MPTS process is on finding demonstrations of insight and remorse by the doctor and the panel helpfully suggest what she might produce before the hearing next year. Including

A reflective account addressing what you have learned and done in respect of the Tribunal’s findings of facts, impairment and sanction demonstrating your level of insight;

[As a bit of an aside, in my thoughts about this I had a sad chuckle earlier remembering LB’s approach to unwanted stuff like hex bugs, broken watches, the egg of trust. He just binned em. Without hesitation.]

The panel should have drawn a dotted line under a potential apology at this stage. It really doesn’t take much insight or reflection to realise that it is probably too late. There’s heavy irony here that the panel are prepared to drag an apology out of Murphy in pursuit of evidence of insight without themselves showing any insight or reflection of the continuing brutality of the process for us. Murphy, likewise, is demonstrating no insight into her actions if she’s prepared to suddenly fashion an apology after everything she’s done and hasn’t done.

Final thoughts

Power is, as always, at the heart of this sorry business. The power to withhold a genuine sorry or to give a half baked non-apology. The power to choose to send ‘the sorry’ a circuitous route to the recipient or simply to others. The power to give a medic – who catastrophically failed a patient by not providing the most basic of basic medical care – chance after chance to buck her ideas up. The erasure of any consideration of the impact of the whole process – including actions taken and decisions made – on the family and wider.

This is an extract from one of the responses sent to the Professional Standards Association expressing concerns about the panel sanction decision.

The Equality Act requires public sector agencies to make reasonable adjustments such that the service offers a similar standard to groups such as disabled people to that experienced by other people. Using learning difficulties as a mitigating factor points in a direction contrary to the Equality Act, seeming to accept that standards are lower for medical professionals working with people with learning disabilities.

I can’t help thinking the MPTS process has descended into some kind of farce. Underpinned by an inability to see LB as a person, demonstrated by using ‘learning difficulties as a mitigating factor’.  It’s the only way I can make any (non)sense of it.

[As a postscript, as I’m struggling to make sense of this, if anyone has any different thoughts please chip in below.]