The bathroom renovation

Part 1

The bathroom renovation. An extension built fifteen or so years ago thinking about LB’s long term future. A downstairs bedroom and bathroom (always surprisingly) reached through a door under the stairs into what was a narrow garage.  A never quite [don’t ask] finished space steeped in emotion and history. ‘Valuing People’ an unformed kernel of an idea back then. ‘Still Valuing People’ to come. Still.

A failed attempt to complete it a few years after LB’s death. And silence.

Now. The clear out. Shelves of untouched stuff. Dust art installations to fascinate, intrigue, repulse. How does undisturbed dust work? Shake down, replenish and/or pile up?

Who is this little fella in a glass?

“The glass is from the Queen’s coronation” offered Rich.

A 68 year old glass. Seven years of dust. A mystery figure. [And 107 days…]

Sadness and excitement about reclaiming the space.

Part 2

This morning. Just after 7.30am. Shaken awake from strike slumber in a panic of door knocking and dog barking.

Christ. It’s the builder.

You go.

You go.

We grub around for bits of clothing in the dark.

He’s early.

Yeah. That’s a good sign.

Yeah.

I run downstairs and open the door.

Paul.

Sara.

Sorry, I’ve not been well. I may have to leave to get to the hospital quickly.

Crumbs, sorry to hear this. You shouldn’t be at work.

I’d rather be working to be honest. I’m fed up with doing nothing at home. I just can’t lift anything heavy. 

I offer him a cuppa. He’s not allowed fluids other than water before 10am. He’s brought water with him.

“What’s that face for?” asked Rich coming into the kitchen.

Nothing.

Part 3

We learn fragments of Paul’s life across the day. Family, health, (not) stockpiling bog roll and stories from decades of renovating bathrooms. A second builder pitches up to help. His wife texts to check on him. I learn about the technical background to the extension and plumbing failings. No damp stone is left unturned.

Love, quiet graft and commitment fills the space. And, with no whiff of cheesiness, hope.

Stolen time, mother blame and writing back

 

Gawd. Not written a blog post for what seems like yonks. I think this is a good thing. I’ve also been on strike for what feels about a decade which is generating unusual space to think and reflect about stuff.

This morning crafting vintage crochet squares my eyes/thoughts drifted to beautiful, beautiful photos of our kids. And reflections about stolen time. Time spent enduring accountability processes, on fighting, meeting, demanding, researching, reading, raging, reading, raising, howling, meeting, missing, fighting, raging, howling and missing. Missing so bloody much.

I totted up one strand of this stolen time.

It is unnecessary. These processes shouldn’t take years. Or force families to become almost vigilantes in pursuit of justice.

I also thought about the tenacity and strength of the tentacles of mother blame that continue to try to drag me/us down. Me/us flagging here how the ‘mother blame’ stain works to circulate a narrative of ‘unbalanced woman’ disconnected and distinct from a loving family and friends.

Undertones, hints and hammers 

The still busy blame work continues across diverse settings and spaces. Examples from the last few weeks:

A comment in a Hampshire newspaper. Mazars a tool to discredit one trust or just to appease a certain someone?

A Facebook discussion. What worries me is her being in this position of power over very vulnerable people and seemingly completely unaware of what’s she’s saying.

Disproportionate indignation and the personalising of a wider, independent work outcome.

An extract from a draft manuscript in which a senior exec is portrayed as victim in contrast to an obstructive mother who really should have been offered grief counselling early on.

Writing back

A form of writing back, to borrow from post-colonial literature, is part of my/our personal, academic and activist life. Rich and I talk about it. Katherine Runswick-Cole and I have published about it. #JusticeforLB ran with it and, with George Julian’s clear vision, generated new ways of being, doing and acting.

Writing back is about trying to redress oppressive and enduring imbalances. Of reappropriating and resisting harmful discourses. Shades of refrigerator mothers, accusations of hysteria, irrationality and, ironically, imbalance.

The techniques available to public sector bodies wanting to silence people include discrediting, crushing and co-opting. In this order. I was never big on titles or throwing about my business so early attempts to discredit were short lived. Hints of a generic single mother on benefits are hard to sustain when you are married with a senior academic post. From being invisible, the Dr (‘Dr’) title assumed almost comedic proportions as events unfolded.

Attempts to crush are woven into the fabric of accountability processes as well as the everyday actions of senior health and social care figures. No funding for legal representation at inquests without punitive and intrusive scrutiny. Interview transcripts with NHS staff with sub-sections titled ‘My Relationship with Dr Ryan’. The secret review by Oxfordshire County Council in which the author spoke to everyone but us spinning a teeth achingly biased yarn. The commissioner’s letter about the terrible harm ‘my’ campaign was causing. Countless crushing examples.

Co-opting can be an effective tool in terms of maintaining the status quo. Selfie slide shows of families with ministers, politicians, big charities… People sign up to working with different strands of health and social care to generate change, working with and influencing from the inside. Rich and I dipped our toes into the co-opting pool. Both were short lived experiences as futility shone through. Outrage and incredulity this week from long term National Autistic Society supporters as the penny finally dropped. This is a corporate, self-serving beast.

And what if the silencing techniques don’t work?

Mmm. This has been a ponder and a half. The following point all overlap…

If the techniques don’t work you are not playing the game. You are at fault.

If you remain uncrushed you are clearly not assuming the appropriate, culturally ascribed role of grieving mother. You are stripped of feelings, your bereavement stolen.

People you’ve never met develop a strong and irrational (again heavy on the irony) dislike of you. A disproportionate monstering. A danger to others…

If you resist co-opting there is no resolution. And there is no resolution if you don’t. Superficiality of ‘improvement’ efforts continue with an ever ready queue of co-optees while necessary structural and cultural changes remain untouched. From the outside we don’t have the distraction of insider tinkering and remain a nuisance.

Finally, and what gets lost in all of this, is bereaved families are the only interested parties, to use coronial language, who are typically not directly connected to or part of what happened. This makes the attempted silencing and subsequent monstering all the more monstrous.

The end. For now.

[Please chip in with comment, reflections or criticism; these are very much half formed thoughts.]

Quest Craven and the end of a decade

I’ve drafted posts on paper, on this blog and in my head on and off for weeks and months now. And kind of enjoyed not posting them. It feels right. I may revisit some of these ghost posts. Or not. Some (many) are about (malingering) grief. About the intense pain and sadness I feel. And always will. With patches of pretty much happiness. That’s cool. I don’t want to always be Captain Bringdown. I remain in awe of feelings of contentment.

I’ve got a sort of manageable grief gig thing going on that kicks in along my walk to work in St Aldates. A space of enormously wide open sky. Taking in an ever present smorgasbord of coaches outside the Ashmolean. Mentally ticking off the die cast models LB collected while acknowledging post-death models he could only dream of. The road ahead leads to the cemetery.

Tonight I want to write about one atrocity story. Before we leave this decade.

Back in the day I would likely have laid out the pre-story to this. In considerable detail with links, drawings and other illustrations. [This blog with JusticeforLB.org and 107daysofaction produced by George Julian will no doubt provide a weighty and comprehensive account of the utter shite that passes for health and social care for certain people in the 21st century. Ripe pickings for students to unpack in years to come.]

I’ve lost my appetite for up to the minute documenting. For calling out, calling on, demanding, raging and howling at the moon and the stars. Six years on the resounding response in terms of demonstrable action is ‘we really couldn’t give a flying fuck’.

The swears no longer work.

Quest Craven

This is a story about a private provider called Quest Haven who run two ‘care homes’ for learning disabled people in Surrey (amongst other ‘care’ related practices). I strongly urge you to:

  1. Have a graze of the CQC inspection report highlighting the harrowing failings in anything approaching what could be described as ‘care’ in one of the two properties.
  2. Reflect on the longevity of this company (set up in 1997) and the fact that until November 2019 the Directors (three members of the Tagoe family) claimed to be Registered Nurses.
  3. Have a look at the Quest Haven website.
  4. Note that the claimed Registered Nurse status of all three Directors has now been revised to, er, not Registered Nurses. The Directors of this private provider were all faking their credentials.

Apparently the Nursing and Midwifery Council and Care Quality Commission couldn’t give a flying fuck about this fakery. Classy bunches as ever. We have no idea how widespread this practice is and the limp response suggests there is little or no appetite to root it out. Particularly, I suggest, when those receiving the non care are of so little value. Tinned mac n’ cheese on a budget of (an estimated) £3k+ a week is apparently rock and roll.

So, as we enter the third decade of the 21st century the appetite, guts, knowledge and integrity necessary to shift entrenched failings in practice and support remain elusive. Talk is talked. Big salaries are drawn among public and third sector organisation bods. Family members continue to be co-opted and effectively silenced.

Meanwhile in a bungalow in Surrey people continue to be treated like shite by fake nurses who don’t know their care arse from their elbow. Quest Haven rakes in the readies as commissioners across the country remain apparently glad to wash their hands of ‘troublesome people’. A regulatory and commissioning system continuing to choose to look the other way.

Way to go. Way to fucking go. We need a new plan for the next decade. One that does not bolster and help sustain this rot.

What do you do with those tears?

I sat on the Oxford Tube heading to London this morning. Beautiful, beautiful, warm sunshine. Listening to an accidental playlist I don’t remember making. As we approached Lewknor unexpected tears kicked in. Alan Silvestri’s Forrest Gump? Christ. Silent weeping at the back end of a packed coach to London. 

I started the surreptitious eye wiping routine. Left cheek. Swift wipe with the back of the hand. Wait a mo. Right hand, right cheek. Swipe. 

The woman sitting next to me studiously studied a Housing related journal. Two beautiful young boys on the other side of the aisle silently swung their legs, gadgets charging. Absorbed in technologies that weren’t a distant speck when we used to chug up to London on days out. Bus and heavy haulage spotting. Waiting to get there.

Are we nearly there yet?

I stared up at the skylight trying to back the tear flow. A half arsed study of sky through dirty streaked tinted plastic. Forrest Gump. Where did that come from? Those fucking tears. Falling in a space of strangers.

What do you do with those tears?

The Bayswater Road was closed. I got off at Shepherds Bush.

Wave for Change Day. Muswell Hill. Mixing, mingling and fun. Thorny issues around who speaks for who discussed in a space of openness and acceptance. I rolled with the waves. Listening to people talk about lives and experiences. Imagined futures and fears.

My phone ran out of charge on the way home.

Home.

I turn to memories. Dusty photos and love. The kind of love that makes tears tumble at the drop of an unexpected tune.

Pembrokeshire. Circa. the good times. Paddling in the shallow shallows. Orange binoculars. Early Learning Centre police tabard. Baseball cap. Hoofing up your shorts. Living your best life.

I love you.

Videy Island and the Bravo bar

A short ferry hop to Videy Island, a small, beautiful island packing a punch and cracking cup of hot chocolate. The first building built of stone in Iceland. A space of blues and greens and heavy clouds. Shades of grey and layers of mustard. Last ferry back 6pm.

Given the Reykjavik coach tourist industry we kind of assumed a lot of people would be tramping round Videy. It was deserted. A couple of people on the ferry we never saw again and the odd figure in the distance.

So much to see, absorb, wildlife, wildflowers and silence. Dotted with artwork and memorials. Yoko Ono’s Imagine Peace Tower; a blue light installation visible between 9.10-8.12. Fifteen men died when HMCS Skeena sank off the island in 1944. Einar Sigurdsson and rescue team saved 198 men via a line secured to the island over several hours during the storm. The men who died set off on floats before the ‘abandon ship’ call was cancelled.

Later, the Bravo bar. Pints of Viking and brighter colours. Reds, yellows and orange. Turquoise and sunshine.

Eight days in Reykjavik (2): Approaching Videy Island

Day 2. Rain. Solid, grey, vertical rain. And little response to it. No dramatic posturing, rushing or jostling in doorways. Locals and tourists, snug in a smorgasbord of artic-type weather gear, ran with it. Without running. We walked to Laugardalslaug public pool. Twenty minutes along an office lined road into a neighbourhood of grey, pebble-dashed chunky residential buildings with open garden areas. Scattered bikes and BBQs.

I learned the pool rules during my summer research: shoes off outside the changing room; naked showering with important areas for suds highlighted in posters; cozzy back on and out.

I hadn’t realised two shower inspectors would sit in a booth opposite the open shower. Minutes later, after asking a few, nerve generated (did I pass muster on the sudster?) clarification questions answered with charm and politeness; “Er, you can take your towel if you want but it is raining outside”, we were basking in a steaming geothermal pool. The now light rain peppering our faces.

That evening we discovered ‘happy hour(s)’ in the Bravo bar on Laugavegur.

Day 3. The sun was out. We had a plan. A trip to Videy Island. Would you just look at this:

Mount Esja beginning to reveal unimaginable strength and beauty. And Videy Island that thin slice of mustardy coloured land laid out in front of her (although we didn’t realise it at the time). A walk around the headland to find the ferry port.

No words really. An Icelandic director’s house next to the Sigurjon Olafsson Museum and artwork to graze en route. Heavy haulage action I could only dream of talking to Connor about. And a short wait for the ferry across to the island.

Postscript. In writing these posts I keep coming back to the composer Olafur Arnalds.

Particularly this:

He apparently refused to translate Georg’s poem because it would lose some of its beauty.

Eight days in Reykjavik

Eight days in Reykjavik*. A long time for us to be on holiday. In a city with temperatures around 10 degrees and steady rain forecast. We went plan-less having planned the trip the whole summer. Hiring a car: ditched. Iterations of the same tour in a range of different colour and sized coaches: ditched. Temperatures steadily rising at home. I stopped googling. And reading.

Day one. A five minute walk to the sea early morning and glimpses of Mount Esja beneath heavy clouds. Following the sea wall alongside a dual carriageway and backdrop of highish rise flats we passed the opera house and reached a picture postcard harbour. Whale a minute!  This was never in our non-plan.

Kitted out in thick red onesies, goggles, life jackets and gloves we were bouncing out to sea on a speedboat within 30 minutes. Our guide a Prisoner of Cell Block H guard type with layers of understated charm, humour, orders and persuasion. Vertical arm for help. Horizontal arm and clock position shout out for whale spotted. The puffins had pretty much left for the winter. We waited, engine off, bobbing in the North Atlantic. Grey drizzle. Deep, dark waves. Exhilaration, joy and intense horizon studying. Minke whales and a porpoise dolphin whale pitched up, late season. Thank you.

That first day was particularly blue. With tots popping up in the nearby Punk Museum and a shop window display.

*There’s a kind of non back story behind this.

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.