Failed my son.
Crushed my son.
Restrained my son.
Denied his epilepsy.
And let him die.
You then turned to us.
Failed my son.
Crushed my son.
Restrained my son.
Denied his epilepsy.
And let him die.
You then turned to us.
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.
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.
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.
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.
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.
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.
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.
We 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:
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.
He asked me 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.
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.
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?
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.
A pitstop in Boston and then the Downeaster Amtrak to Soca for three nights in Old Orchard Beach. Old Orchard Beach on the Maine coast. A place name that oozes nostalgia, honey, nuts and vanilla, quaintness and a slow pace of life.
Outside Soca station (it turned out the train doesn’t stop at Orchard out of season) a frazzled woman with three cute tinies was on the phone to the taxi company.
‘An hour?! I phoned from the train an hour ago and booked it for 3.15pm. Why will it take another hour!”
“There’s only one taxi left in town,” said a woman with a deep voice, sitting on a nearby bench.
This interjection was ignored.
“Well what am I supposed to do? I mean I don’t even know where we are. I phoned an hour ago!”
“Soca,” said the woman on the bench. Delivering deadpan worthy of Greyhound Dave.
I was hoping to get a cab given the unexpected journey but a) my phone wasn’t charged and b) it wasn’t looking likely given the one cab in town scenario. At that moment, a jumpity old bus oozing with character pulled up bearing an ‘Old Orchard Beach’ header. Mmmm.
$1.50 stuffed into a metal box and entry into the world of the Soca/Old Orchard Beach shuttle bus. A bus that has no stops while stopping any where.
I was reminded of Rachel Simon’s book ‘Riding the bus with my sister‘ as I asked the driver about my motel destination. This became the collective concern of pretty much everyone on the bus. Where was my motel and how would I get there? From a bus which seemed to wander around Old Orchard Beach picking up anyone who nodded.
At one point, a passenger got off the bus to pick up a pizza he’d ordered which was being held by someone on a park bench. The driver took the opportunity to get off too. And try and get a bit more local intel about my puzzling destination.
By this stage my iPad was being passed around the bus as people zoomed in on the red flag that identified my motel and the blue dot that marked where we were. Kind of near really. Close enough to walk.
The passenger reappeared with an enormous pizza box. Followed by the driver.
“I think what you need to do is to get off the bus when the blue circle gets close to or at the red flag.”
Everyone nodded or murmured in agreement. Conversation turned to the unexpected closing of Dunkin Donuts.
This blog has again loomed large. It did at LB’s inquest and again this week at the ongoing GMC tribunal. Dr Murphy’s respective barristers both presented it as a transgressive space/action that somehow underpinned or fed into what unfolded. It was a malign catalyst for something (I’m not sure what either barrister was trying to argue other than the blog damaged the relationship between some consultant psychiatrists and a patient’s mother).
How social media ‘feedback’ is ‘used’ by health and social care is the subject of considerable research, some of which is happening in our research group. A colleague has been interviewing people who document their health experiences online to explore why they do so.
When I started writing the blog back in May 2011 ‘online patient feedback’ was not a twinkle in my eye and possibly wasn’t even a thing. I wanted to capture the funny stuff that happened in an online diary. I didn’t expect it would be read beyond close family and friends (or even by them). In fact it became quite widely read and a few hundred people started to follow it. The fun focus sadly disappeared towards the end of 2012 and it became an account of trying and failing to get support for LB and subsequently the 107 days he spent in the unit.
This week the blog questions unfolded like this [RP is Dr Murphy’s barrister] :
This was ground already thrashed out during LB’s inquest nearly two years ago now [VM is Dr Murphy talking about a community psychiatrist].
A different view was presented by the Band 6 nurse during his evidence:
I was told a few years ago that a STATT staff member was warned about LB’s imminent admittance four days before he was admitted. I thought this must somehow be wrong. I mean we didn’t know the unit existed until the day we took him there. It was almost in the realm of Mulder and Scully terrain to think that discussions were going on, without us, about a specialist unit we were to find out about from a mate on March 19th.
This week it became apparent that Dr Murphy and other consultant psychiatrists had discussed LB’s potential admittance to STATT (unrecorded discussion) in the weeks before it happened. I spoke with one of the consultants from back in the day earlier today and it turns out that my blog was known about before LB was admitted to STATT. My blog (and my aggression or forthright communication depending on where you sit) generated strong emotions, anxiety, irritation and distrust. There was, as JC said ‘an irrational fear of the blog’.
Social media activity like this was unprecedented and no one who was bothered about it knew how to deal with it. Appeals were made to senior Oxfordshire County Council (OCC) levels to somehow close it down. These were robustly rebutted by a redacted person who, like JC above, suggested that it created an opportunity for engagement.
I appreciate the frank discussion which happened with no notice today. I was also shocked that consultants could be so discommoded by the blogging of a parent, that none of them were able to read, discuss or engage with what was being written in a constructive way. I’d been carefully documenting the complete lack of health and social care support for an increasingly anxious and unwell young man for three or four months by then, or possibly longer. This is remarkably similar to the Blog Briefing Sloven circulated the day after LB died in which concern focused solely on reputation and professional pride.
I wonder if my writing style somehow added to the fear and distrust. The irreverence and liberal swearing. If I had written a more conventional and ‘polite’ account would it have been better received? I suspect not given the consultant I spoke with denied actually reading it. This was irrational fear.
I’m baffled that not one of these consultants was able to speak to me about their concerns. (Interesting we could have an open discussion today… I assume the toxic mother label is finally shifting as Sloven failings are finally recognised.) I’m deeply horrified we were oblivious to this consternation about the blog when we admitted LB. As the GMC argued this morning, it was Dr Murphy’s responsibility to talk to me about LB’s treatment. It was also the duty of these consultants, surely, to share their concerns with me about my blog?
I suggested to the consultant that the extreme response at the time was generated by the lack of actual challenge to medics by patients or families who are too easily silenced in different ways. The blog created a space of challenge but instead of being used to improve practice, or even engage with and consider the limitations of practice, it was despised and I suspect had an impact on how LB was treated. The veneer of professionalism can be shown to be very thin when ‘transgressional’ activity takes place.
There is some irony that #JusticeforLB is now used in health and social care learning and teaching. The blog also created an unusual contemporaneous record of what happened. The power of the posts that reviled or worried staff before LB died formed part of the evidence at his inquest. The typically disempowered position family members occupy when their testimony is dismissed as ‘anecdote’ differed here. Lowly families aren’t allowed the defence of ‘I did it in my head’ like Dr Murphy has used this week at the tribunal but I had written it down.
There is much to think about, discuss and chew over here in some ways. In other ways there ain’t. Health and social care professionals should be engaging with patients and families in different ways, at different times and in different spaces. They should be encouraging comment and feedback. I hope our experience is already historical and within the ivory tower of unassailable medical practice medics are learning to be more humble and take public accounts of patient experiences as opportunities to better understand the consequences of their actions, or non-actions, and the interaction between the various individuals involved. These accounts should be treasured not vilified.
Aww… found some school stuff of LB’s I’d not gone through. Such treasure. Including a funky LB Warhol pic (eerily prophetic of Maurizio’s artwork), and a ‘Winter holiday diary’ in which he’d written
Went to the rare breeds farm and let the goats out.
That was so, so blooming hilarious…
There was ‘Health and Safety in the Workplace’ work where, in answer to the question ‘Why are these rules important?’, LB replied ‘You need rules to keep safe’.
Alicia Wood drove from Devon late afternoon yesterday. And pitched up at ours, en route to London, with her longtime friend, Maurizio Anzeri, and the artwork he created from a photo of LB. We’d seen, and loved, photos of this picture, which was recently exhibited in Aviles with the #JusticeforLB quilt and other brilliance, but it’s impossible to capture the delicate, intricate, extraordinary (and precision) golden thread, stitching/embroidery on camera. (Sort of ironically.)
It is completely mesmerising.
I can’t put into words what Maurizio creates with his work. He typically works with ‘anonymous’ vintage photos, creating patterns over faces with embroidery thread. He didn’t do this with LB. He sort of wove the magic with him, through him. For him.
One of the saddest things that haunts me (apart from constantly missing LB) is the gradual loosening/distancing of him from the continued unfolding of our lives. I know it’s kind of inevitable. Christ. We can’t keep banging a ‘remember LB’ drum every other minute, despite how much I want to. I now understand how much each of us who knew (knew of) and loved LB in our various ways, always will. How could we not? And I’m beginning to develop an encouraging, while patchy, engagement with the ‘he’s always with me, in my heart’ type thinking.
Maurizio has produced something that will always prompt/demand questions, interest and fascination among family and friends. He has created an heirloom. And that is truly magical.
Overwhelming (and kind of surprising) support in response to remaining angry. For productive rage. That’s cool. Just got to keep up the brilliance stuff too. Luckily this seems to fall over itself. Truly extraordinary… For another week, the #JusticeforLB quilt is on display in Aviles, Northern Spain. With the #JusticeforLB bus and this exquisite piece of artwork by Maurizio Anzero.
No other words.