Category Archives: My Life My Choice

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  • Out of date medication policies and no rapid tranquillisation policy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.

 

 

“A one off” and a week that was…

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This has been a right old week. A week of something. Stuff. A maelstrom of emotions and some fucking shite. Tuesday involved a serious schlep to London. First stop a British Association of Social Work conference at their newly opened building in Kentish Town. A talk and run jobby. I was first on. Safeguarding and human rights: what do families need from social work? What do we need? Easy peas:

Thoughtfulness, understanding, knowledge, integrity,

action, transparency and honesty.

The questions were a joy and included “What music did LB like?” I legged it to Westminster to meet with Caroline Dinenage (Minister for State for Health and Social Care). We had a chewy discussion around learning disability/autism related issues together with the lead bod from the Department of Health. I left feeling (surprisingly) heartened that Caroline D has heart, grit and determination.

Sticking around for my next gig, I went up to the public gallery to watch some of May’s brexit debate. The last time I was up in that cosy gallery was watching Evan Harris, then Oxford Lib Dem MP, deliver something about learning disability right back in the day. I remember painting a slogan on a tired old sheet on the kitchen floor one evening and waiting with the large banner at the wrong bus stop outside the Thornhill Park and Ride. Relieved when a mini bus hesitantly pulled over and welcomed me in. The first time I hooked up with My Life My Choice members.

Funny old world.

It was grotesquely mesmerising to watch the non-debate ‘live’ in the Commons. I then headed to Committee Room 10 for the INQUEST launch of Legal Aid for Inquests: Now or Never! campaign. Despite political distractions the room was packed with over 40 bereaved families, members of both Houses, journalists and third sector representatives. Bishop James did a sensitive and exemplary job of chairing a passionate and angry meeting. Three of us – Tanya El-Keria whose daughter Amy died in the Priory and Tellicia whose brother Kevin Clarke died after being restrained by police in London – spoke before the Minister of Justice, Lucy Frazer, responded. She didn’t shine. Trying to defend the government’s baffling refusal to introduce automatic legal aid for families at inquests despite weighty evidence was never going to work.

A summary of the launch by Hardeep Matharu is here. Despite the lacklustre performance by Frazer, captured on each face below, the sincerity, determination and rage in the room was palpable. Labour shadow minister Richard Burgon pledged to reform funding for state related deaths and there was a strong feeling that this is a battle that will (so fucking rightly) be won.

Then to Thursday and the re-opening of the disciplinary hearing into Valerie Murphy’s (LB’s psychiatrist) disciplinary hearing. She had been suspended for 12 months after a marathon hearing that stretched over seven months. She wasn’t struck off partly because of the ‘mitigating circumstances’ of working in the field of learning disability [I know]. Her catastrophic failings covered pretty much every bit of clinical practice. Including the very basics of epilepsy care.

This particular ‘medical’ note haunts me. Not just because it captures her clinical ineptitude. The wording reminds me of commentary about rare or endangered animals.

Evidence of how deeply LB was failed is written into and stamped across pretty much every communication captured during the 107 days he spent in that place and in every review since. The saddest piece of ‘new’ info that emerged from the original hearing for me, was that Murphy didn’t go on holiday until the Saturday after LB was admitted on the Tuesday night (March 19 2013).

We naively assumed she was on leave when he was admitted which is why she didn’t meet him until almost mid-April. She simply didn’t bother to wander over and see a young man admitted in a state of intense crisis before her two week holiday.

This is a tormented sadness (not the right words but no appropriate words exist). She was clearly so fucking crap that it didn’t ‘matter’ when she met him. [I struggle to type these words]. It really didn’t matter.

I can’t (I refuse to) shake off the puzzlement and heartache of how a specialist learning disability (responsible) clinician could ignore a newly admitted patient knowing she was about to go on leave for two weeks. My work doesn’t affect people’s lives/health but I prepare for holiday absence and colleagues do the same. I can’t understand why or how she could do this. [And before the thankfully small portion of medic defenders start with ‘she was so busy’ shite she wasn’t. There were four other patients.]

Murphy pitched up in Manchester yesterday with her potpourri of dry and smelly bits to woo the panel. They swallowed it and decided her fitness to practice was no longer impaired. Her abysmal non care of LB was a “one off”. No questions asked about how this could possibly be or (as chillingly) if it was, why?

The panel in a fuck you statement announced that ‘a reasonable and well informed member of the public’ would agree with their decision to find Murphy not impaired.

They are wrong.

It’s impossible to articulate the intense distress and harm these hearings generate for bereaved families. I understand they are stressful and distressing for health or social care professionals. I get that. As bad as professionals may feel, they typically go home to their families though. They don’t live with an intense pain that defies articulation, loss and an absence that regularly winds, wounds, generates panic, anxiety or worse. They don’t desperately try to hold onto the smells temporarily woven into clothing, visit the earthy spaces where their children are buried or scattered, and regularly howl at the sky.

They simply don’t.

Finally, two brighter developments. As the week unfolded, I missed a call out on twitter about the naming of Eddie Stobart lorries and the brilliant and collective responses to this captured by @Karachrome in this post. I can only imagine what an Eddie Stobart lorry named after LB would mean.

And this morning Julia Unwin mentioned LB in her keynote talk at the Nuffield Trust annual Health Policy Summit. The magic, the joy, the fucking kick ass ‘we can do this’ collective action continues.

Let’s do it.

Danny Tozer

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Danny’s inquest began this week. Three weeks ago we set off on the  #CaminoLB. His parents Rosie (second left) and Tim (second right) joined us for the first few days. (Rosie’s account of what happened before and after Danny’s death can be read here.) Much talk and reflection about the inquest as we carried the red teapot in Danny’s memory.

We hoped, we seriously (naively) hoped and kind of convinced ourselves that Mencap would do the right thing. Given the transparency generated by George Julian’s live tweeting and Mencap’s self proclaimed status as ‘the voice of learning disability’ we thought they’d pitch up and park the dirty tricks bag that too commonly appears at inquests.

They didn’t.

A few initial thoughts here (in no particular order).

A clusterfuck of fuckwad proportions.

Natural cause of death

Danny died of natural causes. Apparently. According to the Coroner’s office. There would be no post-mortem, inquest, scrutiny.

People assume unexpected deaths always involve inquests. Not always. Learning disability is a kind of ‘get out of jail’ natural cause of death card.

This is Rosie and Tim’s fight to gain accountability and answers about the death of their beyond loved son.

Erasure of house mates

Staff trauma was raised by the Mencap barrister ‘without wanting to detract from the family’s trauma’. The distress of the four other housemates present that morning was erased. One witness talked of going to put ‘bags on wheelchairs’ while the ambulance was called. A grotesque and graphic illustration of the non-personhood of people who should be the focus.

Blaming the parents

Mencap couldn’t help themselves. There has been no acknowledgement of Danny’s death this week. No kindness, empathy or apparent reflection. The Mencap barrister brutally cross-examined Tim and Rosie on the first day. Did they complain? Did they complain enough? Why didn’t they make their concerns more apparent? Why and why not? 

Hints of ‘difficult parents’ dripped into evidence. 

They answered each question carefully and with dignity.  At one point Rosie said she’d brought a scrapbook of Danny’s life that she hoped the coroner and others would look at. The contrast of this simple act of love and humanity with the barrister’s questioning was almost unbearable. 

‘Private time’

Much discussion and questions related to ‘private time’. Mencap contributions by staff witnesses and/or their barrister focused obsessively on Danny’s morning wank. This relentless and dehumanising focus seemed to be aimed at absolving Mencap of responsibility for Danny’s death. He was not to be disturbed or interrupted during ‘private time‘. 

The sensor mat

The sensor mat. The epilepsy bed sensor mat translated into ‘no need for observation’. Niggles about the sensor mat tumbled out almost by accident during confused and often incoherent evidence.

The mat worked.

The alarm went off during ‘private time’. It disturbed the whole house. It was definitely working.  It was tweaked and replaced a few months before Danny died. A reference to mat ‘settings’ hastily retracted. The mat had a coloured light – blue, red or green – depending on who was giving evidence. It definitely worked. It was checked every night. 

Except it didn’t work. Whispers emerged suggesting it was turned off during ‘private time’.

Staff members tried to simulate seizures in Danny’s bed. Grotesque, unfathomable action. Unrecorded. Anecdotal.

The mat worked. It didn’t. Nobody really cared at the time of Danny’s death. It was natural causes. No one from the front line staff to local, middle or senior management gave a flying fuck. Danny died of natural causes.

Epilepsy awareness

There was a strong sense (similar to LB’s inquest) that Danny didn’t have ‘proper’ epilepsy. Just a fake, learning disabled type version. A bizarre and incomprehensible position sustained after both Danny, LB (and others) died. I don’t have words for this. Just tears.

Family barrister, Ben McCormack, consistently and carefully raised epilepsy awareness among staff witnesses. He returned to the point that staff knew they should time Danny’s seizures and call an ambulance after five minutes. The observation levels described fell far short of this. His efforts fell on stony and unmoving ground both among front line and more senior staff. An almost pride in epilepsy unawareness played out in court

The hours

Descriptions of the number of staff, ‘residents’ and the sums underpinning ‘sleeping’, ‘waking ‘hours and 1:1 hours was like looking at my crochet chair of tangled wool, half crocheted squares, knots, mistakes and more. Without the colour.

Reported allocations (one house mate had 24 hours 1:1 cover while the rest seemed to have a range of 1:1 and general hours) seeped and steeped into an amorphous mass of incoherence. A nasty mix of double counting and ‘sharing hours’.

The Tozers took Danny home when they felt there weren’t enough staff on duty. A shortage treated with short thrift by one staff member. Danny’s activities highlighted as problematic. The ‘voice of learning disability’ seriously rocked the impoverished life model of supported non-living this week. 

Staff attitudes

Staff provided a pretty much consistent and desolate picture of disinterest, dismissal and casualness. “I can’t remember” a much repeated response. More senior staff members used an almost more baffling “I believe…” for questions they should have known the answers to.

There was no apparent preparation, no reading reports, checking notes, minutes, care or reflection. It was as if Mencap staff were beaten and stripped of any humanity. A bleak, cold and callous picture of disregard. 

I hope Rosie, Tim and family are ok tonight. Their determination to get justice for Danny has already thrown up a shedload of questions, concerns and horrors that should be grasped and shaken by those who should until we no longer accept the shite that permeates ‘learning disability’ care.

I’m just not sure who ‘those who should’ are any more.

 

Smashing it

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We did it. A historic judgement by Mr Justice Stuart-Smith on Monday morning which involved a £2m fine for Sloven Health. LB and TJ Colvin were treated with the respect they deserve. Justice was served. We had been prepared that the sum of money was not as important as the Judge’s comments would carry more weight. As it was Mr Justice smashed both. He carefully read out a judgement so drenched in sense and fairness it was extraordinary to listen to. In a court again packed with JusticeforLB campaigners including several members of My Life My Choice.

The sensitivity and commitment of the Judge, Bernard, the HSE team and the media who attended (many of whom have followed the campaign over the years) were also extraordinary. Kindnesses that will stay with us.

Our statement about the prosecution can be read here.

Michael Buchanan’s news film with beautiful video clips of LB is here.

A few thoughts and outstanding questions

We were surprised (and pleased) to hear Jeremy Corbyn raise LB, TJ and the campaign in Prime Minister’s Questions yesterday. May also praised the efforts of the families. This is good but serious questions remain about the failure of the various regulators/bodies to act on what the Judge described as ‘the dark years‘ of Sloven. Jeremy Hunt is captured in the Commons looking slightly uncomfortable. So he should. It’s not the job of bereaved families to ‘uncover the serious systemic problems‘ in health and social care.

Mr Justice describes ‘very grave concern‘ that endemic failures were allowed to arise at all and to persist for so long. I mean why was this? Do senior people leave sense on a middle rung of the ladder to success? Are critical scrutiny and self reflection dirty words in senior circles? Is the culture so dire that no one can offer challenge to unspeakable actions?

Many of the mountains of email exchanges we have through Freedom of Information requests include abysmal statements and the complete absence of challenge to these statements by numerous people. Norman Lamb stands out as someone who stood firm, recognised how wrong it was and acted. And made sure action happened.

We have in the Justice shed a long standing plan to hold an exhibition plastering this documentation around a cavernous space to allow people to wander around and read the levels of shite and what families are forced to endure. What is said and not said. Replicated in too many other cases.

Looking back across the five years there was a wilful refusal by NHS Improvement, NHS England, the CQC and Jeremy Hunt to act. One example. Two referrals (yes two) of Katrina Percy to the CQC’s Fitness to Practice panel in 2015 and 2016.

1. Mike Richards sent  a ‘fuck off she’s fine’ letter months later (the referral had got lost). 2. After chasing we were told the fitness panel would wait for NHS Improvement’s trouble-shooting Chair Tim Smart’s exec board capability review. Smart bafflingly concluded the board were all fine. Percy again exonerated.

NHS Improvement and the rest continued to slumber.

Point 4 of the judgment states: ‘When the systemic problems were finally recognised, a welcome realism entered the Trust’s appreciation of what happened‘. This interpretation glosses over the crucial point that it was the replacement of ‘pay off Percy’ which enabled the (slow) recognition of failings. She and her turgid, complacent and arrogant board have got off scot free.

Unlike the MPTS panel which decided to include the ‘difficult field of learning disability’ as two mitigating factors in deciding to suspend Valerie Murphy, Mr Justice states ‘the fact that the Trust’s breaches were most likely to affect vulnerable patients is an aggravating factor‘. Of course it is. That he simply saw LB and TJ as human is at the heart of his narrative and judgement. And what has been largely lacking from the broader NHS related responses.

The sentence is here. The biggest Health and Safety related prosecution fine in the history of the NHS.

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There has been some unsurprising meithering on social media about this fine. Yesterday we found out that Sloven quietly sold the Ridgeway Centre in High Wycombe last November. This was one of the spoils they took with them having lost the Oxford contract because they were so shite. A sale that netted them a tawdry sum of £2.3m. Dosh taken from Oxfordshire provision.

It’s a shame the £2m can’t be channelled  into providing groundbreaking provision for LB’s peers some of whom continue to flounder without appropriate support in county.  ‘A TJ and Connor centre of life, love, fun and brilliance’. But that’s out of our hands.

Mr Justice was spot on with his ‘just and proportionate outcome‘.

Finally

We’re pretty much done now. We did what we set out to do and whilst none of it will bring back our beautiful boy we collectively did a bloody good job. As Mark Neary reflected yesterday we may have changed the way campaigns are run.

One of the central features of the campaign has been the extraordinary live tweeting of the various hearings by George Julian. She is now looking into a more sustainable way of doing this for other families. Making dirty practices by public sector funded and instructed counsels visible in real time is priceless. If you can spare £1 a month (or more) please fill in the form on the post and let George know.

I hope a light will be shone on the persistent cover up of the ‘dark years’, the culpability of Percy and the board and that those more widely implicated will absorb some of Mr J’s sense, fairness and integrity and now speak out. Critical scrutiny, transparency and honesty is essential for safe, effective and inclusive health and social care.

I’m off to Spain tomorrow with various #JusticeforLB campaigners to walk the LB bus the last 170 miles to Santiago de Compostela*.

After that it’s back to work. And life.

Thanks, thanks and many more thanks – so many thanks – to everyone who did and kept doing what they could and so much more. We seriously smashed it.

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*UK walks are also taking place. Rumour has it, in another magical twist, Mr Fortune, Winnie Betsva’s barrister from the inquest is doing the Devon walk.

 

 

 

A day in court and some justice sunshine

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L1032452-3The sentencing hearing for the Health and Safety Executive (HSE) prosecution took place this week. The #JusticeforLB bus made a surprise appearance at Oxford Crown Court thanks to Alicia Wood who brought it back from Spain where it’s rested since CaminoLB 2016. Rosie, Will, Owen and Tom joined other family members, friends and more for the final day of sentencing yesterday.

Within minutes we heard the judgement would be delayed until 10am next Monday. Disappointing but five days doesn’t register on my delay scale any more given we’ve waited 1825 days to get this far.

A backdrop to the two day hearing was that Sloven had pleaded guilty to the charges before any charges were brought by the HSE. The new CEO Nick Broughton held his hands up to say ‘fair cop’ and accepted systemic failings between 2011-2016.

[Now known as The Percy Years with an ‘HSJ CEO of the Year’ award as a logo.]

Broughton’s statement included open acknowledgement of the way in which we’d had to fight for justice and how wrong this was.

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#JusticeforLB sunshine at last penetrated the black establishment clouds. A position we didn’t anticipate back in the day.

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This welcome development took a bit of a drubbing by the end of the second day but more of that later.

Bernard Thorogood was acting counsel for the HSE. He spent Monday and yesterday morning laying out the case for prosecution.

Roger and TJ

On Monday this involved the death of TJ Colvin in 2012 at a Sloven unit in Hampshire. In 2013 the coroner found no systemic failures in TJ’s care and it was case closed. That is, until the pesky #JusticeforLB kids persuaded David Nicholson to commission a review into the unexpected deaths in Sloven’s mental health/learning disability provision between 2011-2015. This was to become the Mazars report. An extraordinary review which enabled further scrutiny of TJ’s death.

The details were harrowing. Failing after failing after failing in TJ’s care. The HSE case underpinned by one of the quiet heroes on the long road to justice; Mike Holder. Mike, a health and safety expert, had in early 2012 carefully and meticulously provided details of the ligature and other safety risks in the Trust. He resigned when the Exec Board batted these concerns away like a sleepy bluebottle caught up in a boring meeting room on a hot summer’s day.

He identified 21 long telephone wires across Sloven in-patient provision. The replacement cost for each was £55.

“£1100…” spluttered Lord Justice Stuart-Smith. Yes. £1100 to reduce the risk of serious harm to patients and prevent TJ’s death.

As Bernard* spoke Broughton sitting on the Sloven bench looked devastated. This was in contrast to LB’s inquest when the Sloven team gleefully treated the process like a game of  Top Trumps.

Roger Colvin chose to read his victim statement to the court. This isn’t always allowed apparently but Lord J said yes and we heard him describe his family’s devastation at her death and the carelessness that surrounded it.

The packed public gallery was silent.

Connor

Connor’s case began on Monday afternoon and carried over to Tuesday. The same detail we know inside out but with a health and safety focus. It was heartbreaking to again hear how appallingly Connor was failed and how easily preventable his death was. The overlap between his and TJ’s deaths were grotesque.

In an unexpected move Bernard T detailed my interactions with the Trust ending with this:

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I can’t describe how – I don’t have the words here… powerful? Moving? – it was to hear this said in court. Bernard effectively produced a balm for the raw guilt I continue to drag around.  I hadn’t realised what having ‘your day in court’ could mean.

The defence and dirty dealings

The Trust accepted pretty much the whole of the HSE case. The defence won’t take long I naively thought. We’d been prepared that this section would be pretty unsavoury and it was. It was basically about dosh and reducing how much the trust would be fined.

“Every pound fined is a pound less available for future patient care…”

Of course.

There’s a one third ‘discount’ (I know) in place because it’s a public sector body. Fair enough. But given the thousands racked up by Sloven on legal fees to destroy families, paying mates £3m for shonky viral training and rewarding Percy with a £200k + pay off, the arguments presented were foul to sit through.

The defence barrister proceeded to do a ‘I’m sorry but…’ type number as he undermined Broughton’s ‘fair cop’ position with some dirty little dealings. These included the argument that the coroner had found no systemic failings at TJ’s inquest.

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We saw in the earlier link to TJ’s inquest coverage that her family were deeply disappointed with the coroner’s lacklustre engagement with what happened. The same coroner presided over numerous inquests relating to Sloven without, ironically, finding any systemic failings. A cracking example of how coroners may be ‘best placed’ but may still do a crap job.

The barrister also seemed to suggest that the observation levels for TJ were adequate and the Judge should differentiate between her case and Connor’s in his decision on fine amount. The HSE case was a careful compilation of layers of failings with pivotal chronological points at which the Trust should have acted and didn’t. Trying to pick away at what happened to TJ was unnecessary and cruel for her family to listen to. The point had earlier been made that criminal prosecutions are a very last step for the HSE.

The barrister moved onto the individual responsibility of staff members again trying to  introduce some wriggle room into the hitherto accepted systemic failings pot. Then in an unexpected move mother blame was back on the table.

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Setting aside the fact Murphy’s performance was found to be woeful rather than ‘wanting’ there was no reflection that Sloven’s failure to refer Murphy was further evidence of how shite they were. Instead he tried to weave a further vexatious mother thread taking the shine off the apparently heartfelt declarations in Broughton’s statement.

That’s where we’re at really. Evidence is now done. No more nasties for us to hear (I hope). Sentencing judgement on Monday.

Finally a few thanks…

We’re in awe of Bernard and the HSE team who were meticulous and thorough in their investigation and case building. They were also kind, humane and sensitive throughout.

Thanks to everyone who pitched up from all over (and those who followed the hearing on twitter). The judge could not have failed to be moved by such a strong collective showing on both days demonstrating that TJ, Connor and all the other people who have died preventable deaths in careless, inhumane settings count.

Finally thanks to the Witness service at Oxford Crown Court. I was a bit bowled over having a bespoke person take good care of us during the hearing.

*Apologies if first name is not appropriate here.

Light and the fatberg ingredients

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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.

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Under giant trees…

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I don’t blog much any more. I’m off work. I don’t have the concentration to do much more than play candycrush, sort through stuff and graze social media. I’ve become a half arsed, flakey version of a Stepford Wife. Rich gritting his teeth when I brightly suggest that if we wipe the top of the cooker daily it will remain clean.

My days are strangely unfilled with little and so much. 

I listen to this, over and over again.

Haunting and magical particularly from 3.16.

Richard Handley’s inquest has been live tweeted this week (@Handleyinquest). A cheeky chappy surrounded by love and a family effectively excluded from the work sadly needed to keep him alive. A tale of barbaric and inhumane failings.

The overlap with Connor’s inquest is harrowing. Blame shifting, lies and an absence of remorse. Richard’s mother brutally and unnecessarily questioned at length.

I bought a bag of wool and crochet hooks. I need to learn to hold, hook, turn and gently pull through wool though woollen hoops and loops. I’m watching a ‘crochet for beginners (left handed)’ youtube film. It takes practice apparently but the basics are clear:

“Move your crochet hook under and over the yarn, and then pull it through.”

I do this. Listening to Under giant trees.

‘Always make sure patients with epilepsy are within sight or sound when bathing.’

‘Make sure Richard has a healthy diet (plenty of fibre) and monitor bowel movements…’

Under, over and through.

Clear and simple instructions.

Giant trees. 3.16 is the best bit.

The tribunal, two book launches and a dream

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The five days between the General Medical Council tribunal weekend hearings have gone past quickly really. Filled with thoughts about a family operation (Tuesday/successful), new baby (due last Friday/born at 3am this morning… welcome to the world, Rory Joshua, you cheeky little cutesy), unexpected office move deliberations, the My Life My Choice AGM where the Queen’s Award was celebrated, and more.

Two book launches

Several people at work told me they’d been reading my book. Blimey. My book. I’d almost forgotten about it among the latest GMC hearing knocks, despite two extraordinary book launches last week. The Book Launch Extravaganza organised by Katherine Runswick Cole at Manchester Met on Oct 31. Six brilliant books, including ‘Don’t Cramp My Style’ by Simon Cramp and Kirsty Liddiard’s The Intimate Lives of Disabled People, a brilliant set of talks, discussion and nosh after.

On Nov 2, Helena Kennedy hosted and chaired a launch at Doughty Street Chambers with an all women panel; Caoilfhionn Gallagher, Deb Coles (INQUEST CEO), Helena and me.

It was another wondrous evening not least because of the open, welcoming and relaxed approach by the Doughty Street team who treated it as the celebration it was (a point I’d kind of forgotten en route on the Oxford Tube), and the sense spoken. The audience included family, friends, #JusticeforLB campaigners, journalists, human rights, mental health experts and some twitter legends. Michael Edwards, Dawn Wiltshire, Pam Bebbington and Paul Scarrott attended from My Life My Choice. The highlight of the evening was when Michael E encouraged Deb when she stumbled over the word ‘incredulous’ and then commented “I don’t use long words myself”.

A dream

I dreamed about LB this morning. Only the second time since he died. In the first dream, from what I can remember, I knew he was dead. It was more of an interactional/touching base/trying to prevent me from descending into madness type thing. He was wearing an unlikely bright red jumper.

This time we passed each other in a white corridor which kind of felt like home. I asked him how he was was. In his own style he said not brilliant. He wished he had a job. We sat down on a couple of chairs. Sitting close, leaning in together. Like we used to. I held his hand. There was that quiet intensity and comfort I’d forgotten about.

It took me a few minutes to remember he wasn’t alive when I woke up.

The GMC tribunal

The GMC tribunal continued today with the panel deliberating in private. They will be returning a decision on whether the charges against Valerie Murphy (LB’s responsible clinician) equal misconduct and, if yes, whether this misconduct amounts to a current impairment in her fitness to practice after 2pm tomorrow. Depending on the decision, two further dates may be arranged to decide on a sanction.

I hope she finds it in herself to turn up tomorrow. She was absent last weekend for undisclosed health reasons. I hope I’d turn up to face the music in such circumstances. As much for the family as for my own sense of self worth and integrity. Even if I felt utter shite. As I do.

 

They put their cameras down

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On Monday Sloven pleaded guilty to the HSE (Health and Safety Executive) charges. It was a short hearing. The district judge referred the ‘case’ to Oxford Crown Court for sentencing. He stressed it was important that time was factored in for the crown court judge to carefully read the papers and for a full day to be scheduled for the hearing. He was deeply kind and sensitive, recognising how awful and serious it was that LB died. He made a point of acknowledging our family (my mum, sister Agent T and Tom attended).

We met with the HSE and their barrister, Bernard Thorogood, before and after the hearing. They explained the process and answered questions carefully and thoroughly. At the end they went to let the various press (including the BBC and ITV) outside know we didn’t want to be interviewed. We’d been filmed walking into the building.

They’re still outside. I’m sorry but we can’t do much about it. If you’re prepared to stay till 5pm or so they may have given up and gone… A bit of advice is to try and keep a fixed expression on your faces when you leave.

We grimly walked out of the Banbury Magistrates Court and passed the gaggle of journalists and camera people.

They put their cameras down.

And more…

It was an unexpectedly moving day. With the kindness and respect shown by the judge, the HSE and Bernard T, the media. Julie Dawes, Sloven CEO, attended.

The hearing date has yet to be set but will be in the next few months, possibly early January. Bryan, the My Life My Choice coordinator, emailed this afternoon:

The trustees want to attend on mass (probably 12-15 people) Oxford Crown Court for the SH sentencing.  They wanted to know how you might feel about this rather than them just turning up unannounced.

What do we feel? What a bloody brilliant  idea!

Let’s make it big. Let’s make it colourful and let’s mark this milestone in the lives and deaths of learning disabled people in typical #JusticeforLB chaotic and love coated fashion.

Who knows who may turn up.

 

 

A missing ‘apology’ in five parts

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Part I.

Michael Buchanan (who I suspect bereaved families across the country are developing serious love for) continues to fight the good fight of uncovering and shedding light on brutal NHS practices. He did a piece about the decision of the Health and Safety Executive (HSE) to prosecute Sloven for BBC News on Tuesday.

At one point, Huw Edwards, introducing the story, said:

“The Trust earlier apologised to the family…”

I nearly dropped my glass of cheeky and chilled vino.

“Eh? Did you hear from Sloven today, Rich?”
“No.”
“Neither did I. What apology?“

The next morning, a local journalist rang and mentioned the apology.

“We ain’t received an apology, mate.”

I looked on the Sloven website. Maybe they’d issued a statement. [Putting an apology in a statement is not the way to apologise to a family, mind. I was curious about where this ‘apology’ was].

Nothing.

I continued to hear about ‘the apology’ as the day wore on. With no sign of it. Then bingo. This, on twitter:

carding

Ah. The apology was part of a statement the Trust were sending to journalists. A fake apology extraordinaire.

Part II.

In the same way that the Trust response to LB’s death was to write and circulate a briefing document about my blog to protect their reputation, their response (and this needs to be read within the context that three board chairs, a CEO and a complete set of non-executive directors have now been replaced)  to the HSE decision was to tell the British public, via the press, that they have, once again, offered their ‘unreserved apologies’ to us.

Now Julie Dawes, and your merry band of (shit and/or remaining) executives, here’s the rub:  this is no apology. It is nothing resembling an apology. It is so much worse.

What you have done is:

  • compound the barbaric treatment you have relentlessly dished out to us (and many other families).
  • Make visible the insincere, formulaic and performative ingredients of an NHS ‘apology’.
  • demonstrate you have learned nothing despite saying you have.
  • treat us with further contempt and disrespect I didn’t think possible.
  • show us you remain incapable, either wilfully or otherwise, of understanding basic humanity and decency.

Part III.

The statement is pure spin. A closer look at the wording:

carding2

The HSE has “informed the Trust of its intention to prosecute in relation…” [Prosecute who?] “Connor’s death whilst in our care…” [It could have happened to anyone, we just happened to be holding the parcel when the music stopped.] “Could have been prevented…” [Introducing uncertainty into the findings of the independent investigation and the inquest.] “We would like to…” [But we ain’t going to.] “Once again…” [We have apologised to this vexatious mother relentlessly.] “Offer our unreserved apologies…” [A prize for us to take with grateful hands.]  “To his family.” [Family for PR purposes, ‘the Mother’ for every strategic opportunity to stick the boot in.] “Continues to do everything it can…” [Apart from actually say sorry].

Part IV.

You didn’t get in touch with us to say sorry. You got in touch with the press.

Minutes after finding the ‘apology’ on twitter, I received an email from your administrator. On behalf of you and the Board Chair, Alan Yates, about meeting up with the group of families you have treated like utter crap.

dawes

You can email me about a meeting (to benefit you) but you can’t say sorry.

You didn’t get in touch with us to say sorry. You got in touch with the press.

I find this unforgivable.

Part V.

Rich and I have felt pretty low since the HSE news. People have been saying it’s remarkable that the campaign has achieved so much. It is. Bryan, from My Life My Choice, earlier reminded me of the time I sat in his office a year or so ago, dejectedly saying we didn’t have a craphole chance of achieving our aims… particularly around making sure Sloven didn’t profit from the sale of the Slade House site and a prosecution against the Trust.

The trouble is, of course, LB remains dead; our beautiful son, brother, grandson, nephew, cousin and friend, is forever absent and, within a shifting family landscape, newer family members will never meet their quirky uncle LB, brother in law, second cousin or potential godfather. We know this. Any bereaved family knows this.

What your latest ‘unreserved’ non-apology beyond shiteness this week has shown, is that you have zip all understanding of this, and that you couldn’t give a flying fuck. You have been beaten into a corner by a remarkable, and unprecedented, collective brilliance, and you’ve learned nothing.

Still.

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