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.

The Stobart Affair

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

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

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

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

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

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

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

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

A Transformer…

So blooming simple.

Why not?

Bulk buying Weetabix

Tom’s off to Sheffield University today.

The tears started in a supermarket aisle a week or so ago. I’ve been kind of distracted by the timing of the #leder non-response published this week. Pre-publication leakages, conversations and ever present rage. ‘Campaign’ shite as ever bleeding into and polluting key moments. Life moments…

Weetabix

Seven year ago (seven years…) when Rosie went to university I was in pieces. I was a wreck. Blissfully unaware how deep ‘in pieces’ can go.

Will and Owen went under the wire almost, getting degrees with/despite a backdrop of the inquest, other hearings and so much more.

The supermarket thing was around buying cereal. I went to get the bulk pack of 72 Weetabix. Tom’s been a regular daily sixer for years…

‘We don’t need a big pack’, said Rich. ‘Tom’s going to Sheffield on Sunday’.

Nought to 10 on the Sooty tear front.

Eh? How? When? What?

The aisle dissolved.

Years ago Tom said he’d like to live in a house in which the cereal didn’t fall off the fridge when it was opened.

How did we leapfrog from falling cereal boxes to death, bereavement and a massive fuck you fight? Getting to an empty home without the tumbling, bumbling, brilliant bunch of pups who have taught us so much about life, love, decency? Where did the years go?

I miss LB so much it’s sometimes like a kind of careening thing that ricochets (is this a word?) off discordant surfaces and dazzles and blisters an unbearable raw pain. Other times I hold him so fucking tight in my heart I feel the warmth, power and love of an elephant march that brushes aside the relentlessly offensive and grotesque actions of those who should know better (and I suspect do).

Sheffield

Will, Owen and Owen’s partner Catherine pitched up unexpectedly yesterday. They all rock ‘siblingstuff’ in a beautifully understated and full on love way.

Footy watching, Fortnight playing, nosh and banter. I cooked, crocheted and cried.

We’ve landed an ’empty nest’ card we never expected or anticipated. And a set of grown up kids who I love off the planet.

Tom, have a brilliant, extraordinary time at Sheffield.

❤️

[I’m revisiting unpublished blog posts this week. Sorry I started firing them into the public domain earlier without making that clear or realising that blog followers would get a glut of email post notifications. I’m going plod through them over the next few weeks and add commentary where appropriate in bold without changing the original text. Some may be half finished (sometimes without a title) like this one. Written 19.2.15.]

Blimey. Days away from the anniversary of the publication of what we now call Verita 1. The official start date of #justiceforLB. How awkwardly awkward is this? A young dude with epilepsy made worse by medication, has his medication changed in a specialist [howl] NHS secure setting, experiences increased seizure activity noticed by, er, his family. Is left to bath unsupervised within spitting distance of four members of staff (while the other other four patients allegedly slumber) and drowns. Not surprisingly, the independent investigation into his death was damning.

I went to Banbury today for the first time and, in a fresh setting, couldn’t help noticing the tiny manoeuvres parents do to keep their kids safe from obvious hazards like busy roads. Simple stuff.

It was an exemplary fuck up situation.

And?

And?

There is no and. A year later we’re waiting for an inquest, an outcome of a police and HSE investigation, Verita 2 and a Mazars death review. Oh, and staff disciplinary action.

If LB had full citizen status and died in some other way; a road accident, street attack, drug overdose, whatever, the justice process would typically be sorted by now. Another young person, Martha Fernback, died locally around the same time as LB. Someone was found accountable for her death nearly a year ago. A year ago? I read her mum’s book in which she mentions seeing LB’s freshly dug grave in the woodland section of Wolvercote Cemetery that July. When she was choosing a spot for her daughter [howl]. Her daughter who fell into the mainstream justice stream. Without this murky NHS connection.

Not only are we getting no closer to any sniff of accountability for LB’s death, but the ongoing reviews are becoming increasingly meaningless to us. Sloven board paperwork carelessly records that the mortality review [Mazars death review] will be published late summer. Eh? I was reassured only a week ago by NHS England that this was met).

[Published late summer… Gawd. We were so blinking naive. I thought the non action was ‘awkward’ back in the day. That the obviousness of the failings around  Connor drowning in an NHS bath, highlighted by an independent review, would generate kick ass action. [Howl] This is the plan. The long game. A slow smoking out of bereaved families using dirty tricks like ‘not knowing’, endless delay, state funded stinky Pete counsels and the juicy button of ever present, dazzling pain to press and harm. 

The Mazars review was eventually leaked to the BBC ten months later on 10.12.15.  ‘Officially’ published by NHS England (NHSE) a week later. The day parliament went into recess for Christmas. NHSE pulled a repeat stunt this May with publication of the leder report. Attempting to kick unsavoury findings without commitment to action into the long grass. In 2015, Jeremy Hunt answered questions about the Mazars review in the Commons. Hollow answers but ‘answers’ of a kind. This May he simply left the chamber when the leder review was raised.

There’s palpable optimism and resistance in these unpublished posts. It makes me feel an odd combination of sadness and a raging ‘fuck you, you fucking bastards’. So many years passing. So much billy bullshite. Still.

Over the last few weeks in meetings or chats on social media, the ‘high profile’ of #JusticeforLB has been raised. Anecdotes shared. Email comments. A range of people who now know Connor’s name and what happened.

“#JusticeforLB is a social movement. An unprecedented capturing of the humanity of Connor and so many other people. It’s given families the confidence and strength to challenge the death of their child or sibling…” 

Good. Brilliant even.

Revisiting these unpublished posts has made me reflect how easily they could be written today. 

I don’t remember going to Banbury.]

 

Being LB’s mum

Being LB’s mum. I wanted to write this before ‘being LB’s mum’ changes into something unrecognisable. Which I’m sure it will. Because it already is in some ways.

Being LB’s mum. What a maelstrom. What an identity. What a full on, brilliant, intense, raging, frustrating, hilarious, difficult, intense, relentless, remarkable, time eating, pointless, rich, extraordinary, despairing, delightful, fearful, life changing experience.

I hope the pages on this blog (pre-2013 entries) capture some of this.

I think about LB all the time. Pretty much every waking moment. These thoughts jumble around in, as yet, uncategorised, spaces. I hope, as time passes, I might be able to tag them a bit and park em in a bit more of a coherent order. Maybe. Maybe I won’t.

Maybe the breathtaking pain will continue. Maybe it will become something different. No sign of that yet. But maybe. Maybe it will reduce.

At the moment, I just miss LB. My head spins out of control trying to understand why he’s dead.

Our campaign

The #justiceforLB campaign is taking hold.

Good. And a big up to the many people who are supporting it and driving it.

LB’s death remains non-national headline news? Kind of totally jaw dropping. Given the context. An example of what the hell, consigne to the rubbish bin of life’. Worthless. Meaningless and unremarkable.

But, hey, how many “learning disabled” people make the news?

Who really cares?

I loved an earlier tweet  suggesting we were a “bit too real and honest for delicate sensibilities” (@NitramNotram). I agree. We (talking on behalf of a brilliant, passionate group of varied individuals) aren’t constrained by using delicate language.  We tell it like is. We try break through layers of indifference, shake up the lacklustre or misplaced focus of  big charities and cut through the bullshit,

There has been a shedload (decades) of research, policy making, focus on the provision of “support” and “services” for learning disabled people. Talk of personalisation, direct budgets, choice and autonomy. And? Other than the odd dude, most people I know and know of, in “independent supported living” are being short changed, constrained, bullied and experiencing less than acceptable life expectations. Their parents, if they are still involved, are experiencing an ongoing battle to try to improve or maintain the level of care offered.

Completely shite provision/nonsensical, unwieldy, un-person centred, costly systems rule.

Check out Mark Neary’s blog to get a whiff of this in action.

LB died. He is dead. [Some word could feature here but I don’t have any]

We, as family have to try to make sense of what has happened on a daily basis. In agony, pain, distress, senselessness and outrage.

At the same time. Bizarrely, we’re ‘released’ from having to either schmooze or fear some (typically crap hole) service provision.

“Don’t call me crazy”..

Watched the second part of this tonight on BBC3.  I’m seriously developing a reaction to BBC sub-standard, crapshite, sensationalist, exploitative, poor, cheap, shoddy, myopic, tedious [feel free to toss in any descriptors here, they’re bound to tick em all..] type programming.

Wrong. In so many ways.

I’m claiming an insider perspective to comment on this particular series, though I don’t want to review it in a formal type way. I’ve spent enough time (informally hanging out in the lounge/unit/LB’s bedroom) and formally (in the notorious community team meetings) in a mental health/learning disability unit, to offer some insights into the process of incarceration into these spaces.

The footage of the ‘senior team’ meetings was depressing. And familiar. An emphasis on “fake findings”. That is, kind of meaningless findings, that are just non findings. Er, he/she is ‘er, hearing voices’ that ‘er, may or may not be’, ‘er, potentially life threatening’.. Or made up, gleaned from the latest favourite programme, part of an elaborate setting..’ The tendency of ‘professionals’ involved to seize on what they recognise from their training, rather than engaging with what they were hearing from the young people talking to them, was crap.

I’m weary of tripping around being the mother of a child/young dude like LB. There is no space to say to say ‘this is shite, don’t waste our time’. Even though it often is.

Investigation and observation fuelling/feeding off/creating/generating issues. Common sense ditched in favour of sensationalist/overblown/salary endorsing nonsense that painfully left family members at sea and ‘patients’ lost. Experiences were framed in a pathological/medicalised way that left no space for creativity, originality, difference despite constant background footage of community, engagement, enjoyment and sociability.

A set of beings and behaviours packaged into a tight, awkward and wrong fitting set of parameters.

Legacy, power and the in-between bits

On Friday a Craft Activism day was held as part of the Oxford Brookes Think Human festival. The #JusticeforLB quilt was on display for the first time in 18 months and Janet Read, one of the quilting team of four, was a presenter. Other presenters included Karen Nickell talking about textile art during the Troubles in Northern Ireland, and Roxanne Ellis, who founded the Women’s Quilt celebrating the lives of 598 women killed by men between 2009-15.

The event was held at the Avado Gallery in Oxford.

It was blooming moving and powerful listening to Janet tell the story behind the making of the quilt.

Concerns about whether it may turn out to be a #JusticeforLB tea towel if not enough patches were sent. The bundle of patches from the Messy Church group arriving with still wet glue. Letters sent with stories and concerns around whether patches might not be ‘good enough’. The stretching of the patch size template… The small detail that Janet, Margaret Taylor and Janis Firminger had never made a quilt before.

Janet said when they first laid the patches out on the floor, they realised they had been given a gift. And cried.

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Janet’s sister Jean Draper, a textile artist, was drafted in to help and the just under 300 patches from people aged 3-80 were transformed into a quilt of beauty, spontaneity and power.

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During Janet’s talk I began to think about the in-between bits of the quilt. The individual patches have kind of eclipsed the quilting work. The joining together of different shaped patches into a spectacular whole and the artistic endeavour this involved.

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Karen Nickell earlier talked about how invisible much textile art is, stored away in suitcases or attics. Undervalued within the art world (or dismissed as ‘soft furnishings’). The enormity of this quilt, like other objects of protest stitching, was breathtaking. Joanne Begiato rounded the event off reflecting on the ‘time traveller’ dimension of these objects which have a power beyond those who make them.

Bang on.

A Doughty Street gig

A couple of weeks ago I was involved in a Doughty Street evening event about strategic litigation. I didn’t know what this was but Kids for Law have helpfully produced three short films explaining it; using the law as a tool for social justice. I was asked to speak about the legacy of #JusticeforLB.

‘Ooh er’, I thought. ‘Legacy?’

The (attempted non) publication of the Leder review weeks earlier came to mind. How committed journalists worked to make a ‘buried’ report newsworthy. How editors were willing to take a punt on the unseen report. The passion and dedication demonstrated on that dark day.

This is an example of the legacy of the extraordinary efforts of families and allies to make the premature deaths of their daughters, sons, sisters, brothers, aunties, uncles, parents known and cared about. These issues have become more prominent, connections have been made, networks developed and countless people have stepped up to collaborate and be counted.

Another example is the truly wondrous pop up #CaminoLB walks that took place across the UK when we were walking the #JusticeforLB bus to Santiago. I can’t describe how moving it was to facetime brilliantly cheerful groups of people, many of whom had never met before, from the Camino. London, Cheshire, Kent, Devon, Birmingham…

Legacy is an important strand of social action I learned during the evening. Or steps made can wither away. I suppose, like the quilt, it’s now about looking beyond the headline patches. We can’t bottle the magic of #JusticeforLB but we can certainly start to think a bit more about the in-between bits. How it worked and why.

Battery by bundle and the MPTS transcript

L1032400-3We received copies of the MPTS tribunal hearing transcripts yesterday. I strangely felt some relief reading the finer detail of what unfolded that day last summer. While my brain and heart wept in inept tandem alongside a rage I’m kind of scared of, I could at least better understand why I ended up unwell.  We all knew it was traumatic at the time – Rich and Rosie, Charlotte Haworth Hird, George Julian live tweeting – but my memory was hazy. Now I know.

I’m adding detail here to the post I wrote about the experience; Writing Trauma. Long post warning but this is to give families some idea of what they may face in similar circumstances. And to document how barbaric the (unchecked) processes are.

A few general thoughts:

  1. You don’t typically see medical notes before someone dies. So if for example a psychiatrist jots in medical notes ‘unwitnessed seizure’ the fact you didn’t make it clear the type of seizure you’re ‘pretty sure’ it was is because you’re going through a lot of information and, at that point, it isn’t the most important detail. Once someone dies or experiences serious harm these notes become ‘hard evidence’ despite always being a partial account.
  2. It’s hard to accept Murphy’s new found remorse as genuine given she sat next to Partridge throughout this cross-examination without comment.
  3. I can imagine medics reading this thinking ‘Yep. Well there clearly needs to be robust challenge to the evidence produced. This is a medic with her whole career at stake…’ That’s fine. There’s a process in place here. A process that should not involve trying to destroy someone in an attempt to get a doctor off the hook.
  4. I’m left wondering if the panel allowed the brutality because there’s an assumption of underlying ‘vexatious patient/family’ narratives at these hearings. They seemed oblivious to the trauma being generated in front of them.

 

The transcript

I began by counting the number of questions Partridge asked me. At the time they blurred into a dizziness that I still think about when I wake in the early hours of the morning.

157.

He asked me 157 questions.

157 questions…

Page turning and more

I mentioned page turning in Writing Trauma. It wasn’t only the physical turning of pages in the deep lever arch file but the harrowing glimpses of words, notes and comments about LB across his 107 days in the unit that this generated.

Partridge page turning in action:

‘Can you just turn back to the first statement at page 1?’
‘It is at page 644 it begins.’
‘If you just look at page 645…’
‘If you just go over the page to 646…’
‘If you then go on to page 647 for me…’
‘Can you just have a look in the notes for me at something on page 631?’
‘If you look at 623…’
‘Just look at paragraph 57 of your witness statement.  If it helps, there are some notes at 236.  I hope I have got the right reference.  No. I beg your pardon.  Just pause a moment, Dr Ryan, I do not want to send you on a wild goose chase.  There are some notes at 698 that say CTM meeting, clinical team meeting.’
‘Can we look at the second meeting on page 698?’
‘Just have a look at the document for us, will you?  It is attached to Dr Murphy’s statement.  You have got Dr Murphy’s statement still there just on the side, I think.  There are a number of exhibits to this document.  It is Exhibit VEM/5.’
‘…if you go back to that file at page 692 – sorry, just before you leave that page, Dr Ryan, page 699, can I just ask you about the reference to the seizure monitor?’
‘If we go to page 692…’
‘If you go to 689…’
‘Just go to 685…’
‘If you look at page 673…’
‘If we have a look at 10 June, page 676…’
‘At the end of this at page 679…’
‘At the top of 677…’
‘Can I ask you about the dynamic that was created because if you just look at page 693 for a moment in your bundle there…’
[Break requested by me]
‘… can I ask you to look at page 693…’
‘Just going back to look at your statement, let us go back to paragraph 21′ I think it is at page 70…’
‘Could I ask you just to look at something we looked at slightly earlier at page 647 in the bundle?’
‘I want then to ask you about the incident that you talk about under your heading, “Seizure at the unit”.  It begins at page 32 of your statement.’
‘I think you describe at page 83 that you went to see Patient A on the ward.’
At 84, that you did not discuss with Patient A about how he had bitten his tongue.’
‘Let us just look at that note for a moment.  This is page 541…’
‘On 3 June, this is at page 680…’
‘If we just look at your paragraph 94 – sorry to move you around – back to page 35,
Again we have to go back to the care plan documents at page 676…’
‘It is page 670, 10 June…’

‘Sorry to move you around…’ after nearly two hours of battery by bundle.

Page turning was combined with other tactics:

Just look at paragraph 57 of your witness statement.  Dr Ryan, this is not a memory test any of this.  It is your witness statement at paragraph 57 and it is page 26.  I just want to be clear about this.
Q Therefore you did not hear that conversation.
A No.
Q How long was he gone for, can you recall?  If you cannot remember just say so.
A No idea, it was not long.

Q Again you have no recollection.  I do not want to go through these ad nauseam but you have no independent recollection of these conversations.
Q If we go to page 692, this is 22 April and it is another CTM, at the top there, you will see the people who were present.  Dr Murphy was not present on this occasion.  Do you know if you would have been present?
A No.  If I am not on the list, I would not have been.
Q Can you remember if there was any reason for that; was it work?

Contemporaneous impact evidence and the death blow

My discomfort at the interrogation was apparent in the transcript.

Q At the end of this at page 679, there is note here whereby attendees of the meeting were invited by mum to brainstorm plans for Patient A’s future.
A Yes.
Q You had a fairly active role.
A Yes, in that meeting.
Q You did not feel in any way cowed, shall we say, to put across your point?
A No, I felt as I feel right now.  I felt deeply uncomfortable and distressed and at a loss really but we went through the process of the meeting.

And I was able to identify the death blow among the raining punches. The point that pushed me beyond endurance. I’d thought it was when Partridge described how upset Murphy was by my description of her. That when I asked the panel for a break. It wasn’t. It was later.

When Partridge too dismissed LB’s seizure.

Q That is 20 May, is it not?
A Yes.
Q That is after the – again let us try and be neutral about this – event with the tongue biting.
A It was a seizure.
Q Yes, I know that you feel it was a seizure.  I understand that.
A It was a seizure.

It was a seizure.

Postscript:

GMC transcript