An honorary graduation

Crumbs. This was last Friday now. A wondrous day, memories of which have almost been punted over the fence with a right old ‘knock the stuffing out of you’ type cold this week. Oxford Brookes University wanted to award me an honorary doctorate. A letter from the Vice Chancellor last June. Blimey. A week before the 2018 graduation ceremonies I assumed someone had dropped out at the last minute.

‘Oh yes, I’m around all next week’ I replied… [always the dependable and practiced filler-in].

The invitation was for 2019. A bone fide jobby.

I headed down to Brookes in early morning sunshine with Rich and Rosie. The day started a bit stressful as I realised I should probably get a copy of my 6 minute speech printed rather than stick my phone to my nose during the ceremony. And Rich pointed out a ladder in my tights.

Mike across the road obliged with the printing after replenishing a print cartridge while Rich bought a selection of tights from the local Co-op (which has consistently featured on this blog).

We met up with my mum and dad outside the main Brookes entrance and got swept up by Beth Hill, Events Manager, who looked after everyone, did a stonking job of erasing stress and made me feel like a legit honorary graduate with her humour, warmth and sass. A walk through the ceremony, gown on, professional photos (the first since I was at school) and non stop pep talk.

There was a moment when she took me into the hall before the ceremony. An unexpectedly rebuilt version of the space I graduated in 18 years ago. A time when life had different texture, tone and colour. And a beautiful young dude bouncing around in it.

Beth had a vice grip of understanding (physically and emotionally) because she does.

What seemed like moments later, a ceremonial entry through a hall heaving with students, families, love, pride, excitement and achievement. Professor Jeremy McClancy (love him) nominated me for the award. In his introduction he said the job of academics is to enable students to become active, critical citizens who act on the world and he couldn’t think of a better example. [Sob] I sat in a sea of memories from back in the day. The enormity of everything, my heart swelling and utter sadness was something else.

Then it was time find the white cross on the stage, be given a framed certificate by Pro Vice Chancellor Anne-Marie Kilday, have the certificate magicked away and pointed towards the lecturn. Speech printed and carefully folded in my pocket.

‘You’ve got this’, said Anne-Marie, firmly.

Yep.

It was an unexpectedly extraordinary day; moving, powerful and fun. Rich, Rosie and I spent a lost and lazy afternoon sitting outside a rooftop restaurant in the sunshine. Eating, talking, drinking fizz and chuckling… We went home and slept soundly spread across settees.

I so appreciate the warmth, delight, support and recognition of staff who taught me back in the day at Brookes. Those rollercoaster years of juggling young pups, study, diagnosis, despair and ways of making sense of what seemed, at the time, to be unthinkable. Years that had a preciousness we didn’t understand at the time. The comments from parents and students on the day were equally warming. A resounding ‘thank you’.

Last night David Harling published his latest animation Not from Where I Stand. More brilliance capturing the strands of service brutality and the awesomeness of people like Connor. This week has seen cracking campaigns/developments #strippedofhumanrights, #homesnothospitals and #SENDnationalcrisis. Movements, action, collectivity and commitment to improving impoverished lives.

Who knows, maybe the tanker is turning.

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.

The home movie

Watched a home movie from 1999 this afternoon. A mate dropped the DVD round a few weeks ago. I treated it as a priceless thing at the time.  Looking at it. Wondering about it. Half remembering those carefree days. Touching the box. Kind of feeling something I couldn’t articulate. Sad, so fucking sad.

I realised we couldn’t play DVDs anymore. Times are a changing.

Last Wednesday

Tom wasn’t well. He wasn’t well earlier in the week. He messaged us about his illness from Sheffield. Rich rang him and said come home. I met him from the station. He wasn’t well.

Thursday

Our GP surgery wasn’t taking calls for standard appointments. Only emergencies. By early afternoon we called it as an emergency, phoned and re-registered Tom. He got an appointment (with cracking support from the surgery staff), was diagnosed with tonsillitis (in a nano second) and prescribed antibiotics.

Rich and I were due to fly to Oslo for a wedding leaving at 4am the next day. A plan involving my mum walking Bess. Owen and Rosie pitching up early evening for the weekend.

Around 9pm we were in a cab heading to A&E. Something was clearly wrong.

Tom was triaged immediately and had a convoluted 3 way IV gig put in the back of his hand. Diagnosis: quincy. IV steroids and antibiotics started in the inner sanctum of the A&E waiting room. Tears (and terror).

Friday

Around 2am a bed was found in the Vascular Ward on the West Wing of the hospital. A long, long walk, Tom and drip wheeled in a chair by a kind and sensitive guy. Bed in a ward/room with two other patients. A youngish guy opposite. And much, older guy next to him.

Rich went home. I sat next to Tom.

Such a long night. Punctured with crying, bell ringing and help seeking noises. The pretty much one nurse run ragged. Sad, dark sadness. Tom slept on and off with a snaggy snore punctured by terrifying silences. Brief whispered convos in the darkness. The odd chuckle.

I went to toilet about 3am.

“Hey, you can’t stay here,” said a new nurse in the brightly lit corridor. “It’s a men’s ward. They sometimes walk round with their tadgers out.”

I ain’t fucking going anywhere.

Rich came back after dawn and Tom was moved to the GP referral unit gig by an equally kind porter. There followed a day of exemplary attention, action, IV bag switching, care and kindness. A sackful of prescribed medication/mouthwash packed and delivered hours before the last bag of antibiotics had discharged its duty. Tom discharged two hours earlier than expected giving him time to watch the Liverpool match.

We went home and hung out.

Saturday

A new return ticket to Oslo was organised by the kindest of kind friends. Rich stayed at home. I set off for Heathrow in the morning. At Terminal 5 I waved goodbye to the cheerful driver unloading cases. At check-in I felt oddly light.

“I left my case on the bus…?” I said to the man standing next to me.

I rang Rosie.

Help. Love action.

“Wait at the bus stop. The bus should do a loop back from the central bus station or your case will be in Cowley to collect next week.”

45 minutes later the bus returned.

“What were you thinking?!” said the driver, pulling out my case.

Sunday

Yesterday

At home with Tom. And his playstation. We were able to watch the home movie.

Beautiful, beautiful footage of our beautiful boy. His curiosity and absorption in the spaces. Like the little kid in the photo above, running down the slope. With joy. Surrounded by people who loved him. There was even a clip of the ‘What a Wonderful World’ school play.

Love, love and laughter.

 

The Stobart Affair

The joy generated across the weekend on social media was snuffed out earlier when the Eddie Stobart company announced it wouldn’t name a truck after Connor (despite hundreds of tweets putting his name forward in response to their request for names). The Head of Comms messaged to let me know the ‘no’ last night. Girls names only. We had a brief exchange before I went to bed with a seriously heavy heart. I missed a call from a journalist during a meeting this morning and came out to a BBC report of the news. The story was updated across the day to include the names of men – Lee Rigby, Valentino (Rossi) – who have been named on lorries and a character called Optimus Prime. A Transformer.

The same BBC journalist rang back later and said “You seemed so… so joyful really, in your (blog) post at the weekend. Like you thought it would actually happen…”

Yep. I was and I did. Other people seemed to think so too. The twitter response was an example of the magic generated when a diverse set of people step up and act. The kind of action identified in the Civil Societies Future inquiry report. It involved people who had never met Connor and those who knew him well. Like Deekz:

What’s an Eddie Stobart truck? Er, handing over to Connor here… a loyal, loving and dedicated advocate for all things Eddie Stobart. I was also reminded of this blog post I’d forgotten about; The Eddie Stobart Story. Wow. This must have been when he left the condolence message for Eddie Stobart. [Howl]

By this afternoon my timeline was full of tweets expressing surprise, disappointment and bafflement at the news. Not surprising really. [Why not?]

Some of the key ingredients (for me) of the collective action witnessed in the support for Connor this weekend, and in the civil society stuff, are love, humanity, kindness, community and understanding.

Love, humanity and warmth were fuelling further love, humanity and warmth. The fire burning bright for the Eddie Stobart company to do the right thing.

It would have been so easy for senior Stobart bods to reflect on the extraordinary and unprecedented response to their tweet, do a quick google and decide to chuck their (flaky) name policy out of the window.

A Transformer…

So blooming simple.

Why not?

‘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.