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.

 

‘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.

Birth and birth days

You’ll [‘d] be 24 today. Wow. Just wow. 24... Nearly quarter of a century. You’ve leap frogged from 18 to 24 while remaining 18. We’ve grown older. Living each of these in between years with steadfastness and some brutality.

You beautiful boy. You beautiful, brilliant and kick ass dude. My blooming tears remain as unruly and uncontrolled and I’m glad. I look at photos and just remember being with you. Hanging out. That’s what we did. We just were.

I can’t imagine what you’d look like now. I know you’d be strong, principled, gentle and kind. Precariously occupying a space in which these characteristics are ignored or tossed aside by ‘services’. Still.

It’s beyond wrong that the simplicity of everyday, ordinary life continue to be destroyed by a lack on the part of the state.

You should be celebrating your birthday.

I despise the utter emptiness of these words.

Birth

I remember when you were born. A ‘birthing pool’ filling up a tiny living room. High sides and an enormous volume of water. A birthing pool [Eh? Where did it come from? There was no internet then.] Was your love of water forged in the moment of being born? Being born. Becoming.

Generating numerous heart stopping moments in life guards across the years. Sinking, submerging and eventually reappearing. With dazzling joyfulness and flicking of that thick mop that resisted getting wet.

Until you didn’t. Failed by a greedy and beyond arrogant NHS Trust which focused only on reputation and dosh.

Birthdays

I was in London last weekend for a Reblaw event you’d have loved. A bunch of knowledgable, enthusiastic, feisty and committed students/lawyers smashing human rights law. It was in Moorgate. Coming out of the tube station I stumbled on people heading for the Lord Mayor’s parade.

The Lord Mayor’s parade.

Remember that birthday trip? The lost day we spent on the bus? Stymied by the Lord Mayor’s Parade… 2010? Eight years ago.

Eight years.

You were all ‘children’ then. Some hovering in the hinterland between child and adulthood. Sucking up the foiled outing. It was a cool outing for you. An amnesty on typical kid stuff by the others. It was your birthday. We were all thinking about you and your birthday.

Three years later I dropped the thinking ball. I still don’t know why. I’ve been accused of all sorts. Working full time. Not flagging up that staff should supervise patients with epilepsy in the bath. I dunno matey. Do you remember when you wanted me to apply for the post of Head of the Metropolitan Police? We chuckled about this.

When you raged about being asked to empty the dishwasher and called on imaginary human rights specialists we laughed. We didn’t notice when the large, heavy based saucepan of nosh, nourishment, love and family life suddenly went cold.

Your nephew is one this week. His mum posted a montage of photos and videos on Facebook. So blinking cute. You’d have loved him. Asked endless questions about him. Stood protectively over him like you did your classmates who needed tube feeding at school. Living your life as much as you could in line with your values of what is right, family and love.

Love

I miss you with an ache, a yearning, something impossible to articulate.

I retreat to a space of joyful memories and an overwhelming sea of love that buoys me in the moment. Thank fuck. A space I will guard with every fibre of my being. Wide open spaces of sky, beauty and being together.

A heavy based saucepan I will not take my eyes off.

I received an email earlier today that underlines this wondrousness. I don’t think the author will mind me quoting part of it.

[….] when I’m not sure if I can pull off what I want to say, if I’m in danger of losing my nerve or of going with the flow, I think about Connor and I just say something.

Paraphrasing Rosie from back in the day; you made us feel safer.

Love. Just love.

The Job Interview

I recently applied for a new job. A first since LB died. Over five years of campaigning, hearings and time off. Illness. Work derailed.

The end of death investigatory processes neatly dovetailed with Tom (our youngest) going to university in September.

Unexpectedly home alone space. Time. Time to work. And a relevant job. Timing and fit.

What fit though? Troublesome sweary ranter, thorn in the side of NHS bodies/big charities, determined activist outsider. Or an informed, critical academic?

I dusted off my CV with eyes firmly clamped closed in places. LB sitting squarely at the centre of it all. I can’t ‘weigh up’ his death against the Research Exercise Framework (REF). Academic marker of apparent ‘excellence’.

One referee in discussion about my application said:

I don’t know whether to focus on your CV being robust despite what has happened. Or think about what you could have achieved…

No. I don’t know. How the fuck could any one know?

Does academia have space for activism? [Not really]. How does fit work in practice? Conventional compassionate leave doesn’t fit with our experience. It’s not a one off chunk of time to grieve. More barbaric, drawn out processes – police investigation, GMC and NMC hearings, inquest and HSE investigation – involving consistent and repeated dragging back down and compounding horror.

Six years ago I had a reasonably bouncy, bright academic future.

I was shortlisted. I prepared carefully and thoroughly. The two nights before the interview involved terrible (and unusual) nightmares and long periods of wakefulness. The night before I ‘experienced’ an earthquake on an apparent Italian island in such graphic detail I woke feeling I could write a substantive list of what to do and not to do in the event of such a catastrophe. Grimly devastating.

The interview process involved a lengthy presentation to departmental staff in the morning and interview in the afternoon. The presentation seemed to go alright. Warmth and interest from potential colleagues. Entering the same room three hours later I felt ok until the first question. The room was suddenly boiling hot and felt like it was shifting. I couldn’t think. I began to stare fixedly out of a window that was opened and then shut because it was too noisy. My answers incoherent or worse until gently coaxed by panel members to produce something resembling sense.

Then it was over.

I left making cheerful and appropriate noises. I rang Rich to say I didn’t think it had gone well and caught the train home. At Crewe out of the blue Sooty tears kicked in and continued to Oxford. I wasn’t ‘crying’. More leaking seeping fluid at a rate that was impossible to mop. I just let them roll.

That night and the next day I felt utterly shite. Traumatised. Revisiting my answers which became worse in my mind. I felt intense sadness wondering if the MPTS cross-examination was going to haunt me forever. Were the ‘investigatory’ processes going to become more devastatingly damaging than LB’s death? [Howl]

Over the weekend with visits from the kids and others I largely forgot about The Interview. The experience occasionally revisited with a mix of groaning, humiliation and laughter.

This morning I spent some time photographing plants in the beautiful late autumn light. Peaceful, reflective activity. Capturing cheeky kickass and forthright daisies and astonishing colours.

I didn’t get the job. I didn’t make a strong enough case for the fit between my research and the post.

“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.

An inventory of stuff, silence and grubby feet

I’ve gotten into the habit of looking at family photos with a (love drenched) forensic lens. Trying to remember the moment, the meaning of the moment, bits around the moment… the colour, detail, design and detritus. The grubby feet.

Those grubby little feet.

“Plain tops, different coloured plain tops if possible. That’s all,” said the photographer cheerfully in advance of Rich’s surprise 40th birthday photoshoot. We sorted this instruction with plotting and excitement. Magic captured in the glow of the photo. I missed the finer detail at the time and for years. The earthy, organic, dirty detail.

Give me those grubby little feet to hold for just one moment more… please.

I love photos. I’ve always loved photos. Now I examine peeps, objects and stuff in and around photos. Peering beyond, at the outer edges of the image to try to see more.

When someone dies unexpectedly (maybe any time someone dies) you’re left trying to make sense of, and hold on to, stuff desperately. Precariously. Trying to keep the person, not alive because you know they’re not, but real and crystal clear.

This week Rich and I have been home alone. Unusual silence. Quiet silence. He found a (rare) photo of me with Tom as a baby. On a family day out. London Zoo yonks ago.

The memories. The wonder. The logistics. The weather. Stand out moments. Remembering getting home after. Tired, grouchy, overwhelmed kids. Shortcuts and grubby feet.

“Blimey,” I said, looking at the photo. “I can actually remember eating those sarnies…” [Plain. Cheese. No frills. Sliced (by us) cheddar].]

I’d forgotten about the top I was wearing.

“I always liked that top”, said Rich.

“Where did it go?” I wondered.

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.