‘My silly letters…’ and training turmoil

The wheels of change are grindingly slow in the area of learning disability/autistic support, health and social care. Static really. Talk, so much talk, and little in the way of discernible action. In the last few years, learning disability and autism have inched onto the NHS and social care attention platter which is something. It shouldn’t be noteworthy though given the various stats around life expectancy, employment and wide ranging impoverishment of life which too often extends into death. A blistering letter by Barbara MacArthur in the Guardian last week on the abject failings people continue to experience was widely shared, generating momentary outrage. I did a sort of cry-chuckle when I saw BBC coverage yesterday. Barbara was quoted as saying

“And, of course, I write my silly letters.”

I interviewed Barbara and her son Howard, who are both autistic, 13 years ago when she was 80 and he was 53. She was a veteran letter writer back then.This is what parents do. We act. We do stuff. We try to change stuff. We write silly letters. Meanwhile a new report about research led by Dr Andrew Power at Southampton University underlines the importance of self advocacy, member-led involvement and social interaction in generating good ‘self built’ lives for people with learning disabilities. So important. The report highlights the patchiness of self-advocacy across the UK and I was struck, again, at how My Life My Choice are an exemplar in this area.

The usual suspects

In the last week, the successful bidders for producing the Oliver MacGowan Mandatory Training have been announced. There was a strange moment, a bit like my cry-chuckle, in which despair, fear, bewilderment and resignation rippled across social media platforms.

A bunch of the usual suspects, with a carefully selected token autistic person loosely attached to the National Autistic Society (Autism) and a parent carer loosely to Mencrap, coated with a hefty dose of Positive Behaviour Support (PBS) sprinkles via a third organisation, BILD. PBS can be experienced as an assault by those forced to endure it and yet is readily adopted as acceptable practice. A recent themed review which included 3 clinical trials of the use of PBS found no/negligible evidence it works.

Of the 27 odd groups across England which tendered for this work, it was awarded to the dodgy Mcdodge brigade with next to no involvement of the people whose lives the training will be aimed at improving. A brief foray into the CQC inspection archive (‘It didn’t smell of piss’ TICK) reveals Mencrap and Oughtism really need to get their own houses in order before designing mandatory training for others. The latter has only one domain judged as ‘outstanding’ across it’s entire offer.

Autism is also about to close a school ‘rife with bullying and safeguarding concerns‘. It’s extraordinary these failings and reputation issues (let’s not forget the sickening abuse at Mendip House or the death of Danny Tozer) didn’t factor into the selection process and I wonder how many excellent tenders were among those tossed aside.

An odd phenomenon

Questions instantly started being asked, as they should be, and an odd phenomenon occurred on social media. A bereaved mother (Oliver’s mum who the training is named after) weighed in and held up a grief card calling time on discussion. Odd because any mandatory training needs to start from a position of trust rather silencing. Odd because mandatory training has been a recommendation of various reports over the years and now seems to be ‘owned’ by a member of the public. Odd because it’s 2020 and we know that autistic people and people with learning disabilities should be at the centre of the process yet are barely visible. Odd because the silencing and accompanying blocking was selective. Ian Birrell (above), for example, came off unscathed while various autistic people came a cropper.

The plot thickened later that evening when a parent carer announced he was actually part of the Mencrap training consortium having earlier asked questions of it. His apparent lack of knowledge further highlights the risible public involvement in this process.

The oddness continued yesterday morning when I woke to a message from someone I’ve not come across before who shared a very lengthy DM unexpectedly sent to her. This was a litany of “Sara Ryan does this” “Sara Ryan does that…” “Sara Ryan ridicules the training…”. A cut and paste jobby the kindly tweeter thought and one I had a right to see. Wow. Is this really a thing? Drumming up support (or generating hate) behind the DM wall with grubby missives? [At this point I had a lump of poignancy in my throat thinking back to the joy, transparency and openness of the #JusticeforLB campaign. And how we collectively questioned, shouted, created, critiqued and unexpectedly laughed. I mentally added ‘absence of murk’ to the list of campaign qualities.]

I’m left with sadness about yet another wasted opportunity and more time lost for some people. The awarding of this work to two organisations which cherry pick a small number of heavily stage-managed people to work with, while presiding over failing services, is grim. Both demonstrate a wilful refusal to even start to understand or learn. The involvement of BILD is as chilling. Despite the protestations, it is impossible to believe that the training won’t involve PBS practices. Indeed, BILD have already advertised for a project manager to manage the training and a PBS pilot.

This training has been years in being called for and slow in coming to fruition. It effectively creates a giant empty tick box and a flag for the DHSC and others to wave under the noses of those who raise questions about continuing failings. A bit like the Leder project is described as a world leading investigatory process into the deaths of people with learning disabilities, the new training will be puffed up as something that bears little resemblance to what it actually does.

I hope those involved listen to the concerns raised by many and commit to being open and transparent with their developing work. To those who interpret questions and challenge as ‘bullying’, ‘attack’ and ‘sniping’, I’ll leave you with these words of wisdom from John Lewis.

A tale of three boys and what isn’t

10 years or so ago I was on the slow train home from a long meeting in Whitstable. A mate rang to say Fran’s son J had been sectioned and admitted to a unit in East Anglia. Around 140 miles away. He was 16.

I remember crying on that train. Through horror and devastation. Connor was a chunky slice of happiness then. Laughter and joy. He and J had grown up together, sharing school concerts, after school club, birthday parties and get-togethers. Fun, love and family.

J and Connor’s shared birthday party.

When J finally came home, we did what us parents do: tried to change things. Composed letters and emails, pushed for an investigation into chilling failings and better crisis provision in Oxfordshire.

Connor remained a chill pill. Fran captured him making his own lunch one day at hers while we wrestled with the phrasing about sexual assault in a Word document.

Three years later, Connor was in crisis and we stumbled across a nearby ATU. A revelation to local families who had no idea of its existence. We admitted him and he died. [A constant haunting of did we not know about this place because it was known to be shite? And almost worse… if yes, what does that mean?]

We thought, if nothing else, his peers would receive gold plated support from this point on.

Since then J has spent months in ATUs in Wales, Lincolnshire and just outside Oxfordshire. His family have pounded motorways, the phone and internet trying to spring him. Trying to generate appropriate support in Oxfordshire and the life he deserves.

J’s inpatient stays have overlapped with A, another young man from Oxfordshire. Two families. Undertaking the exact same work with the exact same people. Oxford Health, the CCG, NHS England.

Meetings, anxiety, fear, rage, exhaustion, more work constantly chasing up meeting notes and responses. Weeping.

Facing a brutal wall of disregard, disrespect and contempt. Deceit, obfuscation, lack of interest and blame.

These various inpatient experiences have involved over-medication, abuse, injury and deep, deep trauma. And parents who try to negotiate calling out abuse/failings while living in fear of reprisals. Deep powerlessness and frustration. Intense and giddy frustration too easily spun into something else by those sitting at their desks in their well paid jobs, chomping on their M&S sarnies, idly scrolling through emails. Diss/missing parents as irrational, as difficult, as the issue.

I can remember hearing how packed the usually empty car park was in one ATU as the CQC were due to inspect.

I can remember one mother describing how she hid in her car one day to try to catch the psychiatrist who was never on site when she asked to see them. She’d noticed that they had signed in in the visitors book that day.

The fob offs. The lies. The accidental overlooking of emails. The absence of treatment. The harm. The abuse. The trauma…

There was talk of course. So much fucking talk. Of homes being found in Oxfordshire for these boys. Of funding pockets. Grants. Renovations and more. Transforming Care talk. And more talk. Next month. The month after. By Christmas…

All the while emails remain unanswered. There were gaps in information, contradictions and empty promises.

Advice and suggestions from families, self advocates, My Life My Choice and Oxfordshire Family Support Network around developing new models of crisis support over ten years have been ignored. Contact with the higher echelons came to nothing. Ray James. National Director for doing fuck all at NHS England and No Improvement (for certain people).

J is currently at home. With his family living in siege-type conditions. Every day is precarious and unpredictable. A team of exceptional support workers is held together by the glue of Fran, family, love, determination and bloody mindedness.

As I write this, A is being taken by his parents to the local 136 suite on a section 3 for ‘treatment’. The only aim of admission is ‘improvements to the relational security surrounding him in the community’. From here, his family have been advised, an inpatient ‘learning disability bed’ is being sought. A needs a single-person set up and there are very few of these in the country so he could end up anywhere. The last time the family were offered a bed for him in Northumberland – a 6 hr drive from Oxford. For the moment, A’s family are happy he is remaining in Oxford for the weekend and A is happy because they are bringing him some Ratatouille stickers tomorrow.

As to what happens next week, who cares? No really. Who cares?

J and A.

Memory sticks

Slow, slow countdown to July 4. Year seven.

Back in the day I wrote raw, fuck you accounts of grief. Real time, incoherent pain accounting. Trying to translate the unimaginable, unspeakable, incomprehensible into words. Into some sort of coherence.

Writing grief.

Seven years on it feels more like shades of a shipping forecast.

Lighter impact. in terms of dominating everyday life, tasks, being and doing.

Timing. winding and wounding moments, longer spaces between.

Emotional state. tears. water. drowning. sadness.

June 18 and my eyes (heart) have started the random, now familiar, tear filling gig. Working from home/Zoom meetings offer unexpectedly novel passing options. The immediacy of being able to delay joining meetings for a few moments. Of not turning on the camera.

longer spaces between.

I’ve taken to decanting the content of old memory sticks onto google drive. Memory sticks. Tumbling into particular date space clusters: presentations, photos and files. Recalling a conference or ten with seventeen hundred versions of a mediocre paper and flight details. Interspersed with detritus from the last seven years. Screen grabs, documents, reports and more, laying bare the outlandish and unspeakable. Snippets of horror and the inhumane.

Then every so often a photo pauses time.

Thinking photography

Post-death, photos demand forensic scrutiny. The whole shebang followed by a meticulous poring over the minutiae. The cast, the setting, the props, the clothes. The weather, the light. Faces, emotions, action and more. My eyes repeatedly drawn back to Connor. Sit kneeling in that funky way he did. Slightly disconnected from engaging with whatever is capturing the attention of his classmates off camera.

I sit and imagine him going back to his class, eventually getting his book bag, a mini bus journey taking a good 40-50 minutes to travel the 6 miles home and late afternoon/evening unfolding in familiar, unseen, unremarkable ways.

When you have a finite time with your child, each piece of stuff – photo, anecdote, a piece of school work, school diary entry, painting – becomes something so much more than it ever was in the moment. The dustings of unfolding life tend to be lost in the complacency of an imagined forever.

I’ll take shipping forecast grief. And a focus on the good times. Beautiful, beautiful, cheeky chappy.

A week in lockdown: shiftiness and jogging on

Lockdown so far: I gave up drinking and started running. Couch to 5k. I gave up and started again. Baby drinking. And running. Badly.

Monday. NHS England said they weren’t going to publish the COVID19 death figures of learning disabled and/or autistic people. The data would be packaged in the 2021 Leder review. Leder 2021. While deaths continue. Unacknowledged.

Running. 1.5 minutes. 3 minutes. Week 3. The same run three times. A lot of walking.

Wednesday. A shift in position. The data would be bunged to Public Health England (PHE) for analysis. A masterclass in vagueness. Careless shiftiness. Rebecca Thomas wrote this piece quoting PHE Director, Dr John Newton.

‘More likely to have health problems…’ says Newton, casually revealing ignorance underpinned by prejudice. Grim combo in anyone. Terrifying in a senior public health figure. How in the actual hell on a mouldy cracker drizzled with stench cream can you direct Public Health England without a scooby about health inequalities?

‘Any findings will be considered’ he added, stating the bleeding obvious. Only there is no bleeding obvious for certain people. Only hard won baby steps which remain under the constant shadow of obliteration. Also in the piece, Tim Nichols fights for a seat for autistic people at the death stats table and the new Mencrap ‘leader’ chips in with a weak, throwaway ‘it’s unacceptable’. [Of course it’s unacceptable. Is this really what you get for a three figure salary?]

An anonymous, hate filled comment under the article was removed after intervention by people on twitter. ‘They bring it on themselves, getting special dispensation to go out more than other people, killing people by their actions…’ This is the gist. Paraphrased.

There is no bleeding obvious. There is no collective outrage around inciting hatred of certain people. COVID19 is like a lightening rod, generating viciously bright sparks illuminating what those in the know know. Have known for decades. And yet it still it takes pressure to make people turn their heads. To encourage people to see what is now grotesquely visible. A labour that never ceases, never eases. Despite the solid and equally committed collective of allies, self-advocates, families, education, health and social care staff, politicians, human rights specialists, journalists, academics and so on.

Thursday. A small group of these concerned citizens got in touch with some of a core of legal experts leading legal challenges to the current denting or worse of human rights. Could the decision to not publish the data be judicially reviewed? Apparently so. At the same time, Harriet Harman wrote to Hancock requesting the data be published:

Running. 1.5 minutes. 3 minutes. Consistent and steady. Well thought through. No sudden movesPlenty of walking.

Friday. The Medical Director of NHS England and Improvement [for certain people] said the data from acute hospitals would be published during the daily press briefing. No other news. No mention since. No update published online. Nothing.

This week local BBC ran a piece on Soundabout:

It is truly joyous. I catch the bus to work with Sam sometimes (had no idea he is such a fab singer). He works at Brookes at Harcourt Hill and catches the U1 because he likes the stop announcer’s voice. I’d never noticed her before. Have a watch with a cuppa, and maybe a choccy bic or two, and tell me some people don’t count.

Then think about the shoddy and slippery way some people’s deaths are treated. People who almost inevitably lead shortened lives because of the way they are treated in life.

[More on the legal action later.]

Superman and the starship

Dominic Minghella wrote a powerful post recently called ‘Eleven days in March following on from the equally powerful ‘From the dark end of the street’ in which he describes his experience of COVID-19

In his latest post Minghella calls out the government for the eleven day gap between knowledge and action. A period of explicit herd immunity, ‘last gasp of breath’ commentary and the hand of Cummings. Minghella says:

Incredible, isn’t it? Thousands of people suffering or dying or grieving because of those eleven arrogant, stupid, murderous days.

…those eleven days show us that our government has form. Left to its own bewildering devices, it makes terrible decisions.

This gap is now at nearly 40 days as more experts wade in and call out grotesque government inaction. It seems clear that a mis- (or deliberately) guided policy initially focused on the economic (and eugenic) belief that a chunk of ‘burdensome’ people dying through lack of immediate action was no bad thing. A speech by Johnson in Feb highlights his belief that the UK should be the country to soar Superman-styley during the pandemic. Going boldly where no country has gone before.

For disabled people and their families the pandemic has generated an additional layer of fear and terror. Being considered not worthy of life is a jobbing hazard when you don’t fit narrowly defined normative expectations of what it is to be human and it wasn’t long before people were receiving template DNR forms. While we don’t know the number of deaths in care homes and residential settings, it’s obvious this group of the population have been left without adequate care, attention or protection.

In a recent publication, medic David Oliver suggests blanket DNRs are an issue of ‘poor choice of language and a depersonalising style of communication’ rather than a deviation from the general principles of  choice between life and death facing medics:

Oof. Way to go Oliver. Spoken only from the comfort, superiority and safety of not being on the Does Not Count list. A group of disability rights campaigners have launched a legal challenge around the failure of the government and NHS England to publish guidance on how NHS treatment for COVID-19 will be prioritised if demand outstrips supply. We want a bit more than medics ‘choosing carefully’.

Of course, learning disabled and/or autistic people have been suffering or dying or grieving for decades of arrogant, stupid, murderous days. Terrible, terrible deaths. What we are currently witnessing is mainstream bods experiencing what disabled people and families experience as pretty much normal across their (typically shortened) lives. A gut wrenching dismissal of human life through a combination of greed, ignorance, disinterest, fear and arrogance.

There are some green shoots [I know] however. Signs of enlightenment and a wakening and warming of attitudes to difference. Channel 4 News covered the legal challenge live yesterday in cracking coverage. Sky News, similarly, ran with a serious fist pump moment:

A man. A beautiful man. And his family.

Human life.

We have to ask ourselves what the woeful response to COVID-19, leading to countless, devastating deaths, is revealing about the treatment of and response to different people. Reflect on the enforced, widening recognition of what it’s like to be treated like complete and utter shite. As dispensable and disposable. We have to think about what this means about us all as individuals and as a society. And we need to make sure we don’t lose this small light and the too rare tumbling of the marginal and the mainstream.

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.