The unmaking of a scandal

When we met Jeremy Hunt back in the day (I know), it was a deeply frustrating meeting because he didn’t listen. And insisted that improving NHS patient safety generally would improve the lives of learning disabled people.

He didn’t seem to understand that learning disabled people typically die prematurely. That there is, too often, a lack of value and worth ascribed to certain lives, and the denial of an imagined future. That these factors feed into the ways in which people are treated. In life and death.

He used the Mazars review, which found that less than 1% of the deaths of learning disabled people and older people with mental health issues were investigated, to ask the CQC to review NHS death investigation processes generally. With a ‘focus’ on the deaths of patients with mental health issues/learning disabilities.

Mike Richards, CQC Chief Inspector of Hospitals, made a statement about this review in April 2016. He didn’t mention learning disability or mental health.

A CQC scoping paper (undated) about the review refers to mental health and learning disability once:

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Less than 1% of deaths investigated translated into ‘important challenges around multi-agency working’. Simply extraordinary. The incontrovertible evidence that, in a so called advanced society, certain deaths are simply rubbed out, erased. Again. A double rubbing out.

I’ve not read the review which will be published on Tuesday. The CQC thoughtfully shared the section mentioning LB. This (now amended section) translated less than 1% into ‘less likely’:

The (Mazars) report also highlighted that certain groups of patients including people with a learning disability and older people receiving mental health care were less likely to have their deaths investigated by the trust.

My maths is appalling (just ask Rosie…) but I know less than 1% rings deeply concerning human rights bells. And, you’d expect, demands immediate scrutiny and action.

The writing is clearly on the wall for the unmaking of a scandal. Almost a year to the day of the BBC publishing the findings of the Mazars report. The broader findings of the CQC review will no doubt feed Jeremy Hunt’s seemingly insatiable appetite for all things human factors at the expense of a focus on the erasure of certain lives (and deaths). I hope both the report, and his response to it, prove me wrong.

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Hoovering stuff and traces…

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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The GMC investigation (Part 2)

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Memorial bench lichen at Wolvercote Cemetery. August 2016

Delved back in time to trace the steps of this investigation and it’s worse than I remember. Part 1 covered how, after sending a lengthy and detailed letter of referral, I had to return the consent form to the GMC within 8 days or risk delaying the investigation. Back in June 2014.

So how have the intervening 26 months been filled? 26 months…? Good question.

We started with six weekly updates by letter (good) which tailed off towards the end of year 1.

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Blimey. Another tight deadline for us. Waiting on Sloven as ever. 10 months to get an expert report, get the referred doc to respond and, er, think about what to do next. But at least it looks like the investigation is pretty much finished.

In May 2015 I replied to an email from a journalist saying among other stuff the “GMC should really be any day now (they started last June) and it was at the final decision stage the last I heard, a few weeks ago”.

I look back on these exchanges now and wonder at the utter naivety they reveal on our part. And the (at best) indulgence demonstrated by the – no urgency here, fuck off and wait for as long as it takes, you bereaved families, you – General Medical Council.

The next communication was a letter from a GMC in-house legal person, sent by email on July 15 2015, with this vaguely hilarious subject heading:

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Please respond. That’s all we do. Like obedient (through regular beatings) puppies. Grateful for any crumb of progress. Though this particular crumb was a surprise. Fifteen months after our initial referral:

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What the actual fuck? Why/how does the need for ‘confidentiality’ erase the need for effective and sensitive communication? Is there a collective historical amnesia in operation within these regulatory bodies that means everything that came before is just tossed out with the rubbish? Did no one involved really not pipe up and say something like:

Er, this is a teensy bit awkward given the referral was made over a year ago now. And we’ve led this family to believe that the investigation is pretty much finished. We really should contact them to explain exactly why we are only now collecting statements*.

Nope.

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To be continued.

*We still don’t know.

 

The GMC investigation (Part 1)

Starting a series of posts about our experience of a GMC investigation. I don’t suppose it will be a big surprise to hear that this is utterly shite. I don’t  know what to call it. Journey? Process? Piss take? Shambles? I dunno. You decide. I’ve kind of held off from unpacking this [fill in from above] in case it somehow influences or ‘biases’ the outcome of the ‘investigation’ but have reached a point at which I sadly realise that there is no outcome to muddy, bias or de-rail. Just an inept, unwieldy, careless, brutal, inhumane (no)thing

Back to 2014. When I first referred Dr X after Sloven repeatedly refused to let us know anything about possible staff disciplinary procedures. We got wind that Dr X had relinquished her licence and gone to practice outside the UK.

The referral was harrowing. Having to lay out the reasons why we thought Dr X failed LB (it wasn’t (and isn’t) our job to do so) was deeply painful. Luckily our fab solicitor helped us.

A month later we receive an acknowledgement from our newly appointed GMC investigation officer. Kicking off with a breezy opening:

Thank you for your letter of 22 May 2014 about Dr X.

I will be investigating your complaint and will be your main point of investigation during the investigation.

Note to GMC. We really ain’t complaining about the actions of Dr X. Our son died. Something you seem to erase from this exchange. LB isn’t mentioned until the fifth paragraph. Halfway through the letter:

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This is the grist of the letter. The consent form. Five out of the 10 paragraphs focus on the urgency of returning the consent form. No acknowledgement that someone died. There is no empathy, understanding that we may be in a pretty crap space. The only vague mention of this is towards the end of the letter (before a final demand for the consent letter):

Some people find making a complaint to us a stressful experience… [link to Victim Support]

The irony in this sentence speaks for itself. I think I’ll leave Part 1 here. I returned that consent form before the 27 June 2014 deadline. The only deadline met in this brutal process.

The GMC (are they actually medics?) gave us 8 days. We’re now at 2 years and 3 months with no idea of the end date. Yet another classy bunch.

PS. Hoping I don’t need to spell out the ‘learning’ here but will in a summary post at the end.

Kissing bare feet…

Flew to Helsinki this evening. On a flight with free wifi (Norwegian Air) and a lot of kids. Three little kids just in front. Two younger boys with a slightly older sister who kind of policed them. With a good dose of pummelling, cuddling and arguing. Carefully watched over by their mum across the aisle. Tablets, snacks, learning the Koran (via headphones) and cheeky computer games as the flight went on.

A little girl on the right across the aisle with her mum. And a super cute babe with his mum and dad next to me. Seats 8A, B and C.

A three hour flight. The three kids in front were pretty self sufficient other than the odd headphone war. The little girl to the right slept for most of the flight. She woke when her mum went to toilet, howled briefly, was pacified by her mum who lost her place in the loo queue. Beaten by a man who disappeared for a record amount of time only matched by the smells that emerged with him.

The couple I sat next to operated a pretty much three hour work station between them. Food, cuddles, big white soft toy, love, food, singing, blanket, books, big white soft toy, food, dummy, love, more food. He chuckled, played with the seat table, looked out of the window with excitement, studied the menu, looked at a London guidebook, had a whine, chucked his dummy on the floor, batted the books away, cried, chucked his dummy away again, rocked with frustration, howled and fell asleep.

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His mum kissed his bare feet.

I thought about the kids when they were tots. About that constant space of love, devotion, work, despair, public service, frustration, absorption, protection and completeness.  In between, I read a book about experiences of social change over time (stories from disabled people born in the 1940s, 1960s and 1980s).

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I wondered (again) how the hell we got into a situation in which we took, and left, LB in that hell hole.

When trusts go bad

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Walked into Oxford earlier with Rich. One of those days when there were no end of brilliant photos to take. Including a cheeky bee.

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Got home to find out one of the rebel governors, Peter Bell is under formal investigation by Sloven. Yep. Sloven are formally investigating the actions of a (rare) governor.

Sloven who:

  • initially said LB died of natural causes and all due process was followed.
  • tried to stop the publication of the first Verita investigation which found LB’s death was preventable.
  • spent nearly £300,000 on legal expenses at LB’s inquest to try to avoid accountability.
  • spent nearly £50,000 to try to sink the Mazars review into their death reporting.
  • have been found to be failing by numerous coroners over the past five years
  • etc, etc, etc…

Blimey. A formal investigation…
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‘Seriously derogatory remarks’…. Not sure where, in the guvs’ code of practice, it states ‘thou shalt not say owt negative against the hallowed trust’. What a load of bullying bullshite. Those of you following this deeply harrowing tale of a trust gone bad will know that an extraordinary meeting to discuss a vote of no confidence in the Sloven leadership was stopped on May 17 by interim chair, Tim Smart. He got the Capstick heavies involved. The discussion remains to be had. Now this.

Truly, truly extraordinary.

Extraordinary timescales too. An ‘investigation’ into the actions of a governor with such priority it can be sorted in a month. We’re into the fourth year of investigations into LB’s death. GMC, NMC, HSE.. Every one of them drawn out because of Sloven slovenliness. Delay and obfuscation.

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LB died. He died. Without any accountability. But the investigation into the actions of a governor is racing on. Interviews, evidence collecting and all. By an organisation who failed to investigate 100s of unexpected deaths in their care. I almost think I’ll wake up in a mo. Surely this can’t be happening in full view of NHS Improvement, NHS England, the CQC and Jeremy Hunt?

Surely…

In a final piece of [no words left] the Sloven annual report has been signed off.

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My incredulity monitor has finally broken.

I start walking…

Started walking to work this week. Prompted by consistently destructive levels of rage generated by the continued non action around the Sloven senior team.  (Despite an extraordinary evidence base of failings.) About 3-4 miles depending on the route. Monday was day 1. Bit spooky walking along a long, isolated stretch of footpath by the river to University Parks. Rich came with me the next day, love him. We found a spooked dog. Pippa. I got to work later than planned. I changed my route to High Street/George Street/St Giles…

Then went to Staffordshire, via Birmingham New Street, on Wednesday so walking was shelved. London on Thursday. Watching walking instead.

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Yesterday we walked to town. Raging slightly muted by pounding the streets. Absorbed by watching/snapping everyday life. Back on the High Street, a vaguely familiar couple were snugged up on the bench by the bus stop.

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I photographed them before. Four long years ago. In the life that was. As snug. Just mobile.

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George Street, Oxford. August 2 2012

Today I didn’t leave the house. Among working and hoovering I started reading Victim and Victimhood by Trudy Govier. Unpacking what and who a ‘victim’ is, what being a victim means and different ways of making sense of victim and victimhood. Silence, blame, deference and restoration. Hmm. I’ll keep reading. And walking.

And get a print of the photo to drop off to the couple who apparently sit on the same bench most days. And, I suspect, have a story or two to tell.

And wait. Still.

Updating LB

Hello matey,

Three years now. Well we’re into the fourth year really. I thought I’d update you on where we’re at in terms of justice and accountability. Not far really. [Sorry]. Various investigations limp on. The General Medical Council (GMC) has spent over two years collecting evidence about the clinician who was kind of in charge of you. You know. That woman who spoke to you for about 15 minutes across your whole time in STATT from what I can tell from the records. And gave you Bonjela after you had that seizure. She’s got about a week left to respond to the allegations the GMC have put to her. We’ve no idea what these allegations are because it’s all secret squirrel stuff. She’s working in the Emerald Isle now. Still responsible for patients.

She pitched up at your inquest in October with a barrister who was like the worst of worst baddies in a Simon Pegg film. He, like Sloven peeps, questioned whether we wanted you home. We did. I’m so sorry if that got lost over those hideous weeks in the unit. We stupidly, stupidly thought you were in a safe space while support was being sorted. Turns out all the failings in the unit were written in a report the summer before you went there. But nothing was done. [Howl…]

Your inquest went as it should have done. Superb legal representation (as you’d have expected) and a jury of nine members of the public who listened and understood how deeply you were failed by Sloven.

Other investigations are going on. Still. We met three people from the Health and Safety Executive (HSE) on Thursday with Norman Lamb. The meeting was in Portcullis House which you’d have loved. Heavy weaponery, police presence and security… The meeting was disappointing. Not the objective, razor sharp, robust, investigative scrutiny I imagined. Mind you, the writing was on the wall given the speed in which they slapped a charge against a production company for Harrison Ford’s leg injury in June 2014. 

There seems to be a fog engulfing and dispersing any critical challenge by public bodies of public bodies. And when you stupidly ain’t considered to be fully human, that fog just thickens. 

We managed to get a review commissioned by NHS England into deaths in Sloven ‘care’. This found a scandalous lack of interest or engagement in investigating unexpected deaths. We thought this report would lead to sharp and immediate action. But nah. Seems like this is ok.There’s a bit of tweaking going on round the edges but no commitment to really looking at these deaths or to act with any conviction. You’ve been mentioned a few times in the House of Commons though which would make you smile. 

Meanwhile, Sloven failings continue to pile up. They are seriously shite. NHS Improvement sent in a troubled shooter, Tim Smart, to look at leadership failings. He spent a few weeks there, avoided speaking with families, got some psychometric testing organised and decided there were no leadership probs.

I can hear you saying ‘Mum? Why mum?’ into infinity and beyond.

I dunno. I was waiting for the Scooby Doo gang to pitch up and unmask him as Mr Crawls or one of the other villains in the end. Such a nonsensical, cartoonish judgement. Apparently Alistair Burt, the social care minister, is still looking into it but for some reason, that rag bag bunch of muppets remain in post. 

These systems we loosely brought you up thinking were good, right and just, simply and sadly ain’t fit for purpose. While the public have stepped up and created an explosion of brilliance around you, your life and the lives of so many other people, you were and continue to be well and truly fucked over by those you always firmly believed in. 

There was a story in the Guardian mag about you a few months ago. A very funny journalist, Simon, came round and later a photographer. You’d have liked them both. Joel souped up some of our old photos. Like this one. No orange binoculars but the old shower cap and goggles. Rocking life as you always did. Your way.

Connor

Connor

xxx

State sanctioned cruelty

L1020557Rich and I were back on the bus to London at lunchtime to meet with Norman Lamb and the Health and Safety Executive (HSE). Brilliant sunshine on the walk from Victoria to Westminster. People going about their daily biz. Three years and three days after LB died a preventable death in the care of Sloven Health. 266 days after a jury determined LB died through neglect. And still no accountability.

The meeting, at Portcullis House, largely involved discussion around the length of time the HSE investigation has taken so far as detail couldn’t be discussed.

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Our love for Norman Lamb has been a constant since the curry night when we first met him. He was instrumental in getting the HSE to investigate LB’s death. Writing to the CEO after the HSE originally decided not to investigate. I’ve not seen him in action up close before today. He was deeply impressive, carefully questioning the HSE trio throughout the meeting.  Sense, clarity, knowledge and sensitivity. Pinning down timings, process and progress.

Why did the HSE decide not to investigate originally?

I assumed when I was informed there would be an investigation it would happen straightaway.

Why is it taking so long?

Why did you not work in tandem with the police?

This is not being given the seriousness it deserves. I can only conclude it’s an indication of how learning disabled people are seen as less than human…

It amounts to cruelty to take this long. It isn’t complicated what happened.

I don’t understand why it is taking so long

Where does the failure lie?

There were mixed answers, some contradiction and non answers. The back story is that the HSE originally decided not to investigate because they decided (no idea why) that LB died as an outcome of a clinical decision. [Howl]. After Norman Lamb’s intervention five HSE people reviewed the decision and, with particular focus on the Verita report, decided to investigate. Apparently there was some blurring over investigative responsibility while the police were still involved and the HSE took primacy for the investigation after LB’s inquest in October 2015.

The HSE inspector finished her report in February and it then got stuck in some interminably slow process of internal checking for around five months until this week. It’s now been sent to legal advisors and next steps are expected to be announced at the end of October…

It’s taking so long because these things can do, it depends on the complexity of the particular case, because there was a lack of clarity over responsibility. It most definitely is not related to LB being learning disabled or (slightly less emphatically) because an NHS Foundation Trust is involved.

On the bus home, I had a look through recent HSE press releases. Three bath related investigations since December 2015.

Joseph Hobbin died in June 2013. Ark Housing Association pleaded guilty and were fined £75,000. [December 2015]

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A patient died in April 2008. NHS Kent and Medway Social Care NHS Partnership Trust pleaded guilty and were fined £107,000 plus £25,000 costs. [January 2016]

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A patient died in August 2011. The European Healthcare Group pleaded guilty and were fined £100,000 plus £50,000 costs. [June 2016].

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Blimey. Should never have happened. Well documented risks. Legal duties…

Same old same old. An alternative re-run of Sloven related inquests over the past five years. Lesley Steven, Medical Director, popping up to say lessons learned/changes made and the CEO in hiding. A grotesque and macabre dance around death. Dripping in (meaningless) and lengthy bureaucratic processes. A fine and a non rap over the knuckles. Disconnecting and siloing. No linking between instances of shit care. To enable the wheels to keep turning.

Meanwhile families continue to be brutalised.

We know LB should never have died. We knew before we walked out of the John Radcliffe A&E into blistering sunshine that July morning. He was completely failed by the state who had a duty to care for him. Since then, evidence of Sloven failings have been unprecedented. Both in volume and the extent to which they have led to no action.

Norman was spot on when he said this is a form of cruelty. State sanctioned cruelty. With no end in sight.

 

4.7.16

Approaching the third anniversary of LB’s death…

Death anniversaries involve different layers of sadness to the everyday living with unexpected bereavement. More frequent gut punching, breath stealing moments. Additional anxiety and irrational irritation/rage. Intense sadness. A constant thinking back (to three years ago). An almost compulsive recounting and counting down of last times:

Seeing, hanging out with, talking with, going to [London, the Aziz for Sunday buffet lunch, the farm, Trax…], photographing…

Trying to quash the horror of those last few months.

It’s odd how this date is so important. More significant than the day LB was born. More important than Christmas, Easter, birthdays, holidays. And the days in between…

I’m beginning to think 4.7.13 dominates on the date stakes because it holds a key thread. Between life and death. Between what was and what is. At 10.18am on that boiling hot July day LB’s life officially ended. Our lives changed irrevocably. I (still) find it impossible to make sense of this. Up to that moment LB was. We were what we were.  A few words, spoken by a kind A&E consultant, and we were no longer. 

The lives of family, friends, colleagues, acquaintances and layers of people we didn’t know changed in different ways and intensities.

Maybe we just don’t know what to do with this thread.

I dunno.

4.7.16

Nearly 9pm. Feeling dog tired. Relieved the day is nearly over. Good to hang out with family and friends over the last few days. Too much food, drink. Late nights. Tears, music and laughter.

We waited at the bus stop earlier this afternoon. To catch the 700 to the cemetery.

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Close to where I took this pic of LB on the way to his interview at Helen House in February 2013. When life had a different shape, colour and texture. And a sort of assumed certainty it turned out not to have.

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The challenge (still) is trying to work out what life after LB’s death is and what it means.

With the constant and unrelenting shit storm of Sloven related crap this is almost impossible.

Final thoughts:

Thank you for the messages, tweets, thoughts, best wishes and love today. These are remarkably comforting.

Please read Chris Hatton’s reflections about Tim Smart’s judgement. [With a colourful and insightful illustration from Ben Hatton…]

A powerful piece here by Rachel Hepworth for ITV Meridian in memory of LB. A refreshing focus on My Life My Choice champs who cut through the crap. As always. 

I’d forgotten LB asking why a friend from Springfield, Illinois, wasn’t yellow back in the day.

I miss him.