Beasts, bombs and brilliance

Beasts, bombs…

Last week we witnessed the Care Quality Commission (CQC) prioritise its reputation over the people it’s meant to serve and protect on live television. It was grim viewing. CEO Ian Trentham and Paul Lelliot were hauled in front of the Parliament Human Rights Committee to answer questions about Whorlton Hall (I previously wrote about this here). The Committee published correspondence between Barry Spencer Wilkinson, inspector, and the CQC from 2015 which painfully and painstakingly demonstrates how the Whorlton Hall provider kicked up a stink about Barry’s negative inspection findings complaining the inspection team was too large. Harriet Harman was on blistering form as she picked her way through evidence of a cover up during the session. Lelliot and Trentham blathered on, refusing to answer or chucking blame at pretty much anyone.

‘We have to wait for the findings of the investigation into the 2015 inspection report…’

‘We commissioned two independent investigations into this… TWO’

‘100s of people went in and out over that period and no one spotted abuse. NO ONE…’

After the provider complained, Barry’s report was shelved until a tiny team went in to re-inspect six months later and found lots of good stuff. The published report regraded Whorlton Hall from ‘Requires Improvement’ to ‘Good’. Things like unregulated use of a seclusion room and complaints of staff bullying fell by the wayside until Panorama pitched up three/four years later to record the abuse. [At this point my brain cannot go near what people must have endured in that time or how often this burying of negative inspections happens.]

Barbara Keeley MP has written a cracking letter to the CQC CEO raising numerous concerns.

An immediate outcome of that revolting performance was the resignation via Twitter of four members of the Expert Advisory Group for the current CQC restraint review; Chris Hatton, Julie Newcombe, Jeremy (Beth’s dad) and me. Others may have done so.

And Brilliance…

The following day Rich, Tom, my parents, sister Tracey and hub Jeremy set off for Ross on Wye for the naming ceremony of #ConnorsRig. The backstory to this is that Rhiannon Davies works for Safe Lane Global, an organisation which ‘detects, identifies and mitigates potential threats on land and in water’. Rhiannon and Richard’s baby, Kate, died in appalling circumstances in 2009. Rhiannon and I hooked up electronically a few years ago and spent many hours sharing swear and drink drenched messages of pain, rage and despair as we faced obstruction and worse from the respective NHS Trusts responsible for our children’s deaths.

A couple of months ago Rhiannon emailed me saying that Safe Lane was taking delivery of a new rig and ‘everyone from the c-suite to the drillers and workshop staff would like to dedicate the rig to Connor…’ Just wow.

We tipped up late morning to a boardroom full of treats and #ConnorsRig high vis jackets. [Sob]

Over coffee and homemade cake, Adam Ainsworth, CEO, Paddy and other staff explained more about the work of the company. It was fascinating to hear experts in such an unusual and important area talk about their experiences. We walked down to a nearby field where #ConnorsRig [sob] was parked next to an army tent. With rain hammering down, Paddy talked us through various types of bombs including the beast on the floor they’d detected somewhere in the UK. So many stories, so much passion and commitment.

Next it was lunch during which a barrage of further questions were answered then back to the rig for the red ribbon cutting, a toast to Connor and demonstrations. The afternoon finished with Tom driving the rig out of the field, through the carpark and onto the truck for its return to Kent (a six hour journey). There are brilliant photos and a video [tissue warning] of this wonderment here produced by Richard.

I can’t put in to words what this day and rig naming meant and continues to mean to us. The tears started when I saw the high vis jackets and pretty much carried on into the early hours of the following morning as I thought about how much Connor would have loved the whole thing. Heavy haulage, World War Two ordnance, his beloved London (the rig is small to enable it to access narrow spaces), health and safety… saving lives. So many boxes of joy and intense interest ticked.

I also thought about the contrast between the two days. Senior CQC figures posturing, conniving and obfuscating in response to clear questions by the Human Rights Committee. Demonstrating no apparent understanding (or even interest) that people are brutalised as an outcome of limitations and shoddy practice by the CQC. Little or no decency or integrity to be detected.

And Safe Lane Global staff just doing humanity. Treating us with respect, kindness and generosity. Adam, Paddy, Julia, Ian, Jaymie and others spent hours with us, answering a billion and one questions and giving us a day we will never forget. Memories to feast on forever and the wonderful #ConnorsRig to look out for as it makes its way around the UK snaffling out ordnance and more.

Rhiannon and Richard what can I say? Indefatigable decency and love…. You bloody legends, you.

Thank you.

 

 

The Whorlton Hall disclosures

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.

 

 

We really need to talk about Mencrap (again)

Struck by the almost radio silence by the big charities over the CQC restraint interim report, Whorlton Hall film and Leder report, I found out this week that Mencap [alleged voice of learning disability] currently have eight supported living services and residential care homes with a ‘requires improvement rating by the CQC.

Eight. Bearing in mind how difficult it seems to get anything approaching a failing rating (Whorlton Hall and St Andrews both had ‘good’ inspection ratings until the shite hit the fan), the Mencrap cluster must be quite something. A quick tot up (by someone better at maths than me) suggests a minimum of 206 people are currently getting sub-standard care from the same bunch who forever call on the government ‘to improve’ things for learning disabled people. The grim irony is almost curling my finger nails back from my fingers.

While they keep on with their relentless self promotion and trying to raise money through terrifying already terrified parents and families, I thought I’d have a look at these eight inspection reports [County House (Swindon), Mencap East Cornwall Support Service, Mencap east Hampshire Domiciliary Care Agency, Plymouth Support Service, Royal Mencap Silverhill Bungalow, Tevershall Bungalow (both in Notts), Royal Mencap Woodlands Residential Home (Norfolk) and Treseder House (Cornwall)] to see what strands of the provision are failing so badly.

Christ. What a thoroughly depressing read…

All eight failed to be well led, 7 failed to keep people safe, 3 failed to be responsive and 2 failed to be effective. I mean how can the voice of learning disability with the groaning resources and endowments they continue to pretty much bludgeon out of families (unsolicited will writing seminar garbage continued to arrive for about 3 years after LB’s death) fail to provide well led and safe services?

A few other low lights:

  • No (or absent) registered manager (3)
  • Issues about staffing numbers/availability (4)
  • Medication management issues (3)
  • Hygiene and environmental issues (6)
  • Problems with care plans/record keeping (5)
  • Problems with quality monitoring (5)

The story told across these reports is chilling. In one service people are so scared of a neighbour they are too terrified to go out. While noises were being made to resolve this the inspector noted it has gone on unchecked for some time. Another place was so dirty a family member commented they wouldn’t let a dog live there. Across all eight the impact on people’s lives extended to little or no opportunities for going out to do stuff the rest of us can do. Tablets and TVs a substitute for activities including watching church services on a tablet. “Records showed one person’s care plan had been updated and reviewed the day before the (announced) inspection”. On questioning it became clear that the service hadn’t been providing the support described for a significant period. An ex-care home now badged as ‘supported living’ was still run as such with pooled budgets and daily menus. When it was decorated one person went home while the remaining inmates were decanted to two caravans for the duration. There were the usual issues around MCA misunderstandings, lack of training and people’s rights not protected.

Eight failing services with echoes of the shite care provided in the home Danny Tozer died in. Failings his parents repeatedly pointed out and even paid for a second provider to come in and train staff. This simply ain’t good enough. You should be trailblazing dazzling support, care and provision that enables people to lead flourishing lives, have fun and do stuff they want to do. With such a bunch of heavily bloated directors you should be kicking that ball right out of the park.

Instead, your focus is on reputation, raising dosh and muscling your way into any media opportunity. I’m out of words. Well other than get your own fucking house in order before you dare to make claims about changing the world for learning disabled people.

The full panoply

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.

‘Did anything strange or startling happen today?’

I’ve been in awe over the last couple of days watching the depth of support for the idea of a lorry named after LB unfold in response to a tweet by Eddie Stobart asking for ideas for names. Some background can be found here. If you search for Connor Sparrowhawk on Twitter there are literally hundreds of tweets ‘voting’ for him. It’s truly extraordinary. Particularly the spread of tweeters; learning disabled people, self advocates, parents, siblings and other family members, medics, social workers, the police, tv producers, film makers, social care directors, academics, activists, MPs, a shadow Minister, human rights experts, senior execs from NHS Trusts, regulators and third sector organisations.

My dad used to come home from work just after 5pm every day when we were pups and always ask my mum ‘Did anything strange or startling happen today?’ before giving her a kiss. I’m not sure it ever did to be honest.

This has been strange and startling. With an equally brilliant background. LB was a huge Eddie Stobart fan. We’ve a trunk of memorabilia and bits scattered around the house still. He enjoyed nothing more than a trip on a motorway to silently and beautifully enjoy Eddie spotting in solitude. When Edward Stobart died, he wanted to express his sadness online.

LB’s auntie Sam contacted Eddie Stobart in August 2013, a month after he died, to ask for a truck to be named after him. This was the information she sent:

The company again responded sensitively:

Dear Sam,
Thanks for your email.  Due to the Stobart tradition of naming trucks after females we are unable to name a vehicle after Connor however we have wracked our brains and if you felt it was appropriate we could include a tribute piece in the next edition of Spot On the members magazine. If this was interest please could you send me a photo of Connor. I look forward to hearing from you.
Kind regards, Bonnie
Sam sent this photo of Connor and Rosie flagging up that the sweatshirt might be a pirate version.

[I don’t know if this was an authentic Eddie sweatshirt but it features in the top photo almost unrecognisably. The unit excelled in boiling and shrinking clothes.]

Some of the tweets in support of naming a cab after Connor have referred to social justice and what such a decision would signify for a typically marginalised group of people who are too often denied an opportunity to lead anything approaching a flourishing life. Wendy Greenberg captured this:


It’s within the gift of the Eddie Stobart company to balance the justice scales a little bit and generate warmth, delight and priceless joy to have a ‘Connor Sparrowhawk’ cab beetling around the motorways of the UK and abroad. I can’t even begin to imagine making sense of what this would mean for us amidst the horror of the last six years. Connor never stopped reaching for the stars [his family tree produced by the unit psychologist included Dappy and Tulisa from his beloved NDubz on the sibling line]. The idea of a lorry named after him is the stuff of dreams. It would further be a cracking reminder for health and social care staff (and others) of the importance, value and brilliance of people like Connor.

I hope you can do this. Looking at the hundreds of replies to your request for names Connor is belting it out of the park with little or no competition.

“A one off” and a week that was…

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.

Kark and Percy

The Care Quality Commission (CQC) have a Fit and Proper Person Test (FPPR) process to review whether senior NHS bods are fit to practice. [Sorry about the acronyms and jargon here… Just typing ‘fit and proper person test’ makes my finger tips weep.]

I referred Katrina Percy, then Sloven CEO, to this process in 2015. Mike Richards, CQC Head of Hospital Inspections, ‘missed’ my email. After some chasing he said there was no doubt about her fitness to practice. Case closed.

Jan 2016 and unfitness evidence was stacking up. I referred her again. No reply from Richards. At the end of Feb I tweeted about the lack of response. He emailed saying:

Dear Sara, I apologise profusely for the fact that I must have missed this email. I know that this is not the first time this has happened, but I have absolutely no recollection of having seen it.

No? Mmm. That’s interesting. Percy is a prolific ‘absolutely’ user in communications.

Then nothing. I chased up the referral in March, May and at the end of July. Tim Smart, interim Sloven board chair, decided Percy had done nothing wrong around that time and the referral disappeared. Absolutely nothing to see here.

Why am I raking over this old billy bullshite?

The Kark Review

Tom Kark QC was asked to review the FPPT earlier last year on the back of a review by Bill Kirkup [keep up]. The review which has allegedly had a bit of a tasty journey to publication was published yesterday. A refreshing read in terms of sense and straightforwardness. And so, so chilling. I shudder to think what, if anything, might have been stripped from it. He presented a picture of what can only be called corruption. Three short extracts:

Agreed ‘vanilla’ references? Eh? Really? Is this common practice in the NHS (or wider public sector)? Deceit and incompetence wedged into senior layers while candour and transparency are bandied about like a [fuck you] hope carrot for the rest of us herbs.

Breathtaking hypocrisy.

Two of the seven report recommendations were accepted by the government before the shutters shut. Kiosk Keith styley.

Meanwhile, Percy’s new role emerged on twitter.

And I learned that ‘vanilla’ biographies are also a thing.

Global CEO, Ryalto

Global CEO, Ryalto.

Grotesque spin and reinvention.

Delivering operational turnaround of services… leading organisations through transformational change. In March 2018 Judge Stuart-Smith, sentencing the Trust, referred to the ‘dark years’ of Sloven and issued the largest fine in the history of the NHS.

Designing a comprehensive leadership development and culture change programme. ‘Going Viral’ was an almost comedic (although of course it wasn’t) ‘thing’ which cost about £5million in public dosh. The proof of (this ‘leadership’ programme is) in the pudding as they say. Earlier today Sloven were in the news again for failing services.

The pudding was shite. It simply didn’t work.

She now heads up the global team at Ryalto. A quick google reveals a tiny UK based company with a website light on detail.

Global team my arse.

HSJ awards are not shining here. A money spinner for the Health Service Journal. Self nominated nominees and Trusts shelling out big bucks for the black tie drenched reveal gig. At the same time producing dirty little numbers for the vanilla biog and reference filing cabinet. Glittery tat for bolstering failure drenched narratives.

Not a good look @HSJEditor. For so many reasons.

Percy has taken monstrous to a new level here. Providing a contemporaneous example of the grimness laid out in the Kark review. A failing exec covering up her history without compunction or check.

She’s not alone of course. All those who protected her, bolstered her or looked the other way over the years have a right old stench on their hands too.

Maybe one day these people will have the guts to properly reflect on their actions and non actions. I blooming hope so.

‘Second victims’, the aftermath and incoherence

[2.2.19]

I was surprised and enraged a few years back when I heard health professionals are considered to be ‘second victims’ when a patient is seriously harmed or dies a preventable death. Second victim? Really?

Families are ‘second’ I thought, raged and tweeted. Repeatedly. Our loved ones died or experienced serious harm. We’re left (typically unsupported) to deal with devastating grief. Seeking accountability from a national health service that has an apparently Pavlovian response of shut up, shut down, fuck right off and we will throw every resource we can grubbily wring from the public purse to defeat you.

[I don’t like the word ‘victim’. It’s passive and pathological. It stamps out individuality and erases the ways in which people negotiate and pick their way across tricky or brutal terrain. The ways in which they draw on sophisticated understandings, experience and strategies in grotesque settings. Erasing vibrancy, life and love.]

On a dark, cold, wet evening last December I bumped into the support worker who was on duty the day LB died. The person who found him in the bath.

Meeting staff

After LB died we didn’t want to see or speak to anyone involved in his ‘care’. [The staff were a mixed bag of good, mediocre and foul.] That morning the A&E consultant told us that some staff members were there and wanted to meet us. Sitting, in a state of (what?) I still don’t have the words to describe what it’s like to be in the family room you rarely (if ever) notice during the odd visit to A&E over the years with minor injuries and knocks. I can’t remember the sign on the door now but I remember the horror seeping through my veins, the prickling pain, incomprehension and fear, reinforced by gaining access to this tiny, claustrophobic space. A hair’s breadth from A&E cacophony. Metres from the bus route to town. A ten minute walk from home.

He told them it wasn’t appropriate.

My mum, with the support of family and friends stepped up to communicate with the Trust. Email exchanges archived in a tear stained folder.

We’ve since met or spoken to some staff and seen others give evidence (on paper and in person) at LB’s inquest.

Rich spoke with the senior nurse at LB’s inquest and I’ve talked with him on the phone a few times. We met with one of LB’s key nurses at the inquest (the one who said sorry to us while giving evidence.) A mate (the indomitable Fran) was in touch with a support worker a few years back. He came round one Saturday morning.

In the meantime, Katrina Percy, Sloven CEO, made repeated attempts to try and get us to meet with her. A blunt hammer approach. She never made the purpose of this meeting clear or made any effort to answer the questions we had. Other influential people also ‘encouraged’ us to meet with her. We declined.

Answers and more questions

December 2018. I saw MH before she saw me.

I dunno. I’ve struggled to try and make sense of this encounter. To organise it into letters, words, sentences, sense. Sense. Type. I know it wasn’t her fault. Being on that shift, that morning. I just want to know.

What?

I said her name and she turned round.

She cried.

She cried like I cry.

She cried. And her tears didn’t stop.

Writing this I’m kind of recoiling from the keyboard, I can’t stop crying. Fucking crying… [How is he dead? What the fuck?]

Those tears.

I’m so sorry.

[3.2.19]

I’m trying to generate some coherence by patching together previous, contemporary, retrospective stuff. Knowledge. It’s impossible. So many layers. So much pain, so much sadness.

Two of the things MH told me that evening:

  1. The day after LB died she contacted a dating agency for learning disabled people because he’d always wanted a girlfriend. That night last December was her last night working with them. After five years. She was about to return to education.
  2. LB’s second key nurse KD wrote us a letter after LB died but wasn’t allowed to send it to us.

In the boxes of paperwork, records, subject access and Freedom of Information documents, I remember coming across an email trail just before LB’s inquest 2015. It ended with KD asking the unit manager to tell us how sorry he was. Dated the day LB died or the day after.

Back in the day, we said we’d like the other four patients from the unit to attend LB’s funeral if they wanted to but we didn’t want any of the staff involved in his care there. The response was something along the lines of ‘these patients need to be supported by staff who know them well and understand to care for them’. [I know.]

I’m chucking the coherence towel in now to finish this post. Maybe I’ll rewrite it at some point in the future.

Here’s an interim set of thoughts which I hope are of use to someone working to improve the experiences of bereaved families when someone dies a preventable death in the NHS.

  • I’m sorry our blanket refusal to engage with staff immediately after LB died caused further harm.
  • We know so much more now (in terms of the ‘dark years’ of Sloven) it’s difficult to disentangle what we (others) should have done, or thought, at that time.
  • The person who dies (or experiences serious harm) and their family should be the central concern. Staff (and other patients) should also be given appropriate support.
  • The Trust should immediately say sorry and not prevent any individual staff member from doing so.
  • It was clear in October 2015 that the Trust were cutting adrift numerous staff members as we ended up with 8 different legal counsels at LB’s inquest. This should be the focus of scrutiny by [who? NHS Improvement?] A well led Trust should not be in this position.
  • The involvement of in house Trust legal teams further scrapes away humanity which should be the core ingredient of every interaction with bereaved families.
  • Trusts are able to draw on seemingly unlimited resources from the public purse to defend themselves when something goes wrong. This fact may generate further disregard for families (and frontline staff) in poorly led Trusts.
  • There is a gaping hole here around support, communication and humanity. And something almost ironic about the terrible harm our national health service can repeatedly wreak.

“Ensure the toilet door in the section 136 suite at Antelope house is replaced quickly”

Earlier this week, Rich was out and I was home alone. The growing condiment pile felt right and a deep late Autumn sunset beckoned. I grabbed my camera and headed to South Park. I bumped into a few people I knew walking down there. Brief, warm and casual catch ups. Heading off between each with an eye on the sun. Despite knowing from a newly discovered nerdy site sunset was at 6.52pm.

Across the park there were smatterings of students/freshers, young people and others. Being or pounding across the park in serious running strides, sitting, walking, talking, laughing and playing games. Loosely shared eye and phone action on the slowly setting sun.

I dipped down to dandelion level while waiting.

It was quiet and spectacularly beautiful.

Walking home [after the reported 6.52 sunset and 30 minute twilight window] I felt peaceful.

The next day my phone rang. The latest Care Quality Commission inspection of Southern Health (Sloven) was embargoed until Friday. Ah. Ok… Sloven. A Trust with an astonishingly grim back drawer full of failing CQC inspections. A Health Services Journal award winning CEO (2011 from memory) who doshed a mate millions before disappearing with a £250k pay off back in 2016.

Yep.

All that still trips off my ‘you effectively killed my beautiful, beyond loved son’ tongue. And it will continue to do so until I really understand why.

Back in March we naively thought the outcome of the Health and Safety Executive criminal prosecution and £2m fine was a seminal moment in NHS history. A shot across the bow of all Trusts. A judge pulling no punches in his ruling. Generating critical scrutiny across the health and social care provision of this crapshite trust and wider. Good care, ligature points, care plans, medication storage, staff supervision and so much more sorted. These are basics after all.

Reading this latest report generated yet more tears and distress. How low can you continue to go in providing ‘health’ and ‘social care’.

The inspection in June 18 generated a warning notice around the safety of young people in a Southampton based unit. A warning notice around safety.

Five years after our son drowned. [He drowned]

And so many others have died.

The Sloven exec board are still stretching out their entitled legs. Apparently kicking any whiff of a negative inspection report into the long grass. No determination, commitment or even interest in trying to own these continued failings.

Reminding me of those early, baking hot July days. Almost five years to the day swatting away the CQC inspection like they did with LB’s death. [He died]

There were 20 breaches of legal requirements that the trust must put right. We found 74 things that the trust should improve to comply with a minor breach that did not justify regulatory action, to prevent breaching a legal requirement, or to improve service quality

We issued seven requirement notices to the trust. Our action related to breaches of 21 regulations in seven core services.

I dunno. Reading it I jotted so many notes. Bashing on the keyboard. Scratching furious fucking pen to paper. So much so wrong. Still. Beyond wrong.

The trust had not completed the anti-ligature work at Leigh House (identified as needed in previous CQC inspections) which posed a significant risk to young people and was not being adequately mitigated against.

Governance systems did not always provide robust assurance to the trust board about issues within services. For example, we found the board were not cited on staffing issues in some services, low levels of staff supervision, poor compliance with care planning and an inability to provide accurate restraint data. 

And more:

Poorly written and stored care plans; no patient involvement in or knowledge of care plans; poor note keeping; not following the MHA; lack of staff supervision; inappropriate medication management and storage; risks to young people in MH services; lack of hygiene and broken equipment; issues around privacy and gender; safeguarding issues; ward temperature issues; lack of competence in syringe driver training.

The same old and more. Five years on.

Lives tossed out like rubbish. With no consideration. Reputation ruling the roost still..

This sentence strangely leapt out, from the 54 page report.

Ensure the toilet door in the section 136 suite at Antelope house is replaced quickly.

Sort the toilet door. It only takes a few fucking hours.

Crocodile tears and the ‘do nothing’ advice

Early morning, a column by Clare Gerada appeared in my twitter timeline. Gerada is an ex-chair of the Royal College of GPs so no fly by night. She campaigns (as part of a heavily, heavily NHS England funded gig ‘Practitioner Health’) about doctors’ mental health. This week there has been coverage of doctor suicides with some loose reporting of figures (there were 81 suicides not 430*). Gerada is trying to extend the Practitioner Health service beyond London.

I dunno. You can sit on either side of the fence, or on it. As is too often the case with the NHS following the dosh is an instructive exercise.

‘Sensible advice’ say some replies to Gerada’s column. ‘Best advice I’ve ever seen…’

The heading kind of made my eyes water. Those blooming tears. Still.

Do nothing… immediately.’ I can only now imagine this ‘luxury’ over the past five years. There is no space to ‘Do nothing… immediately‘ for families. We face years of unrelenting, unremitting fighting, policing, and uncovering. Pretty much every NHS related scandal is the outcome of persistent, committed and astonishing actions by families and their allies. Activity that allows no downtime in a grief drenched space.

‘Do nothing… immediately’

‘When a complaint lands on your desk…’ says Gerada. Deliberately disembodying the ‘complaint’ from the person making it. And the space in which it materialises.

The person (human) who probably never dreamed of making a ‘complaint’ to the NHS. I mean why would you? Why would any of us**? It’s a national institution. A treasure. Free healthcare at the point of delivery and all that…

How often do we actually make a complaint about stuff? About trains, airlines, education, retail outlets, telecoms, restaurants? Why would any of us want to make an official complaint against the NHS? What would make us feel driven do this? Complaints in any setting are important for improving service. Complaints in the NHS are crucial because they involve lives.

For Gerada the complaint isn’t delivered or received. It ‘lands’ on the workspace. Disconnected from action and intent. Allowing her to (brutally) focus solely on the practitioner.

‘Do nothing’, she advises. ‘If you can, take the rest of the day off.’ Take the rest of the day off…

‘Do not rant and rave…’ I still can’t understand why the assumed position of a medic would be to rant and ‘rave’ about a complaint. Getting a 3/5 mark on student evaluations is enough to cause some right old soul searching/scrutiny of our learning and teaching practice at work (even after 10 years). The idea we would leap straight to defence of our practice – to ranting and raving – is baffling.

‘Wait for the first waves of shock to pass…’ Still no consideration of the person or family who made the complaint. Of what they may be experiencing; their pain, distress, grief. The piece descends into a google translate type extract. Clunky. Missing meaning. Swerving on substance. With the odd hand grenade planted between platitudes: ‘At the earliest opportunity contact your medical defence organisation (even if the complaint is trivial)’.

In short, Gerada’s advice seems to be ignore the substance of the complaint, buggar off for the rest of day and get your legal defence ducks in line. She ends with ‘don’t suffer in silence and don’t take it personally’.

Wow. Just extraordinary ‘advice’.

She has previous on complaining.

And clearly remains obdurate on the subject. A road traffic accident… From last night.

What I don’t understand is why there remains little critical (in a good way) and open questioning of what is clearly shite and offensive advice by medics. It’s as if once harm has happened or been done, the drawbridge is raised and the profession becomes a pack.

Where is the thought, the reflection. Humility. Or challenge?

*This is in no way to dismiss, belittle or otherwise every health professional who has died.

** For the sake of transparency, I made a complaint to Southern Health NHS Trust when LB was in the unit. I said they didn’t listen to my concerns about his care. About 5 days before he drowned in the bath I was told it was not upheld.