Tag Archives: learning disability

The photo

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Joanna Bailey’s inquest finished today. Joanna, 36, died at a private Jeesal Group ‘hospital’, Cawston Park in April 2018. A day after her parents warned staff they thought she was about to have a seizure. ‘We’ll take care of her’ they were told. Joanna wasn’t observed that night, her sleep apnoea machine wasn’t working and when she was found unconscious in the early hours of the morning, four staff members stood by bickering about CPR until the paramedics arrived.

After a week of chilling evidence the coroner this morning told the legal counsels she would direct the jury to determine that Joanna died of natural causes. There was no budging on this. The family’s barrister Oliver Lewis asked if the jury could be shown a photo of Joanna.

The virtual air across the Microsoft Teams court platform became frosty. The coroner talked about this practice happening in criminal courts. It spilled into her courtroom sometimes [‘prison suicides’] and there was apparent agreement between her and the Jeesal Counsel, Mr Walsh, about underhand motives and the emotiveness of photo sharing. The coroner said:

“I really don’t know what purpose there would be unless it’s to register the fact she’s a human and I think the jury know that,”

After a week of being viscerally dissected in front of her family and wider public with a focus on deficit and deceit, fake seizures, allegations of abuse and troublesomeness, this seemed a stretch.

Mr Walsh insisted if the jury had to see the photo [howl], it should be after the jury had delivered their determination. Hmm, that’s not relevant given the jury has just been told exactly what to write. The coroner made this point to him but Mr Walsh would not budge.

“In my submission Ma’am, the usual practice in this court is not to do so. The only concession would be if it’s still required after the jury return to deliver the determination.”

Joanna’s parents were present during this tussle. Witnessing their daughter being treated with the contempt she was treated with in life.

“Could you show us the photo Mr Lewis?” asked the coroner.

A beautiful photo of a young woman appeared on our screens.

“When was this taken?”

“I’m not sure of the exact date Ma’am, it was within the last six months of Joanna’s life.”

The coroner was visibly surprised. Six months? She looks so different. The small photo she had in her bundle was difficult to see but Joanna looked so, so different [from what she’d imagined? Human even?] She decided that the jury could see the photo briefly.

The jury returned. Joanna’s photo was shown on the screen behind the coroner for about 20 seconds.

The blame

The stench of blame is never far from families of people who die in the hands of the state. As consistent and persistent as the production and content of a Big Mac. The photo exchange was horrible to witness. It highlighted the insidious practices of ‘defence’ barriers in dehumanising the dead to serve the agenda of their clients. It further revealed the assumptions and judgements of the coroner which had dripped across the proceedings like a slightly faulty tap. Why the sea change on seeing the photo?

An A4 photo of Connor stood on the coroner’s desk during his inquest. We even swapped it in week two. The coroner’s assistant made sure it was facing the jury daily. Swapping not swaying. We wanted the various, random members of public sitting in witness to our beautiful son’s preventable death to be able to see and hear about him as a person not a composite of revolting records.

As today unfolded and after Joanna’s photo was fleetingly shown, the coroner faced resistance among jury members to her instruction. The jury had asked informed, engaged questions across the week and were rightly puzzled as to why they were suddenly being told exactly what to write. The coroner’s answers were thin and full of holes. When asked why there was a jury, she gave a classic ‘because’ answer. It’s the law.

They eventually produced a list of eleven concerns about the ‘care’ Joanna received and wrote additional detail on the Record of Inquest form. Bloody legends.

A Jeesal medic, Dr Oyefesu, then continued with evidence about improvements the company had made since Joanna’s death. A tough listen in the context of the deaths of a patient both before and after Joanna. During a fantastical account of the glowing Cawston Park focus on health and wellbeing (despite a very recent CQC failing inspection review) Dr Oyefesu mentioned that Joanna’s family had brought her a McDonalds the day before she died.

“Yes… I saw that’, said the coroner.

For some (many?) of us there’s constant rage around these atrocity stories. A rage, deep sadness and despair. Thomas Rawnsley’s inquest also finished this week with a determination of natural causes. His mum, Paula, fighting every step of the way for her son’s rights in life and death while facing brutal resistance. The coroner’s casual and careless apparent agreement with Dr Oyefesu was devastating. The ‘them’ and ‘us’ the discussion had descended into. The worthy and unworthy. The blameworthy and judgemental response in front of Joanna’s parents.

“It’s patient and families fault,” said Oliver Lewis.

Pantomime swiftly ensued. Oh for senior figures to get as angry about the treatment of marginalised people. The coroner and Mr Walsh jostled for position on the outrage stage: “Such an inappropriate comment!” “How very dare you!” “You must apologise to Dr O.” “Mr Lewis you must apologise now!” “I can’t make you apologise Mr Lewis but I certainly invite you to…” The term abuse was even used.

Oliver Lewis apologised if he’d come across as ‘rude and ungracious’ and suggested there was little to be gained from continuing with the evidence.

This evening Joanna’s dad Keith said:

“We have listened in the last five days to a catalogue of mistakes, system problems and poor care provided by Jeesal Group to our vulnerable daughter. We desperately wanted the jury to be able to consider that our daughter’s death was contributed to by neglect because of the gross failure by the Jeesal Group to provide basic medical care. We are disappointed that the coroner refused to permit the jury to consider that Joanna died of SUDEP contributed to by neglect. We are grateful to the jury who took the time and care with the evidence and raised eleven concerns about the services of Jeesal Group which we fully endorse. We have lost our loving, funny and fabulous daughter and, in our opinion, there were so many missed opportunities to avoid her premature death.”
 

Laminating the dead

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These posts are coming a bit quicker right now. Sign of grim times still. There was an All Party Parliamentary Group (APPG) on Learning Disability meeting yesterday. Barbara Keeley MP tweeted after the meeting clearly laying out the continuing failure to get people out of ATUs. The meeting involved a mother talking about her son’s ongoing inpatient treatment then a load of blather. Helen Whately, Care Minister, was present and again, seemingly excelled in mediocrity.

I don’t know why, nearly 10 years on from Winterbourne View these meetings need to involve the live retelling of atrocity stories. We’ve heard so many now it’s become almost voyeuristic, generating faux horror from a bunch of dusty parliamentarians many of whom couldn’t give a flying fuck outside of that space. It can also be parasitic and draining emotional labour for the storytellers and others present.

The way in which these meetings are organised sustains a narrative of disposable humans and bleak lives while taking time from what should be a clear, focused and strategic discussion on, er, action. It always seems to be the same parents in attendance too. The same small group of cherry picked bods.

This morning on twitter the discussion continued with John Lish dismissing APPGs as a meaningless industry. Five seconds of googling found that it is our old chum Mencrap which organises these meetings. Bit of a giveaway really in calling it ‘Our APPG’ on the website.

Holy macaroni. I tumbled straight back to an underground cafe near the Houses of Parliament where, months after Connor died Rich and I were invited to a meeting at the House of Commons by Mencrap. Not the learning disability APPG I’m now wondering? Surely not… In that dim space, we met other bereaved families and I was given an A4 laminated photo of Connor. Eh?

An hour later, ‘important’ people spoke at the meeting while families sat silently around the edge of the room. Five minutes before the end of the meeting, we were told to stand and hold up our laminated dead.

Seven years on and Mencrap is still laminating the dead. Still following the same revolting template of presenting bereaved or devastated parents to a room of pomp and performance. Nothing has changed. John is right. This is an industry. And further evidence that nothing will change while Mencrap retains the power the organisation has to effectively maintain the status quo in its own self interest.

Memory sticks

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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.

Men at work: Day 105

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LB went to the farm yesterday for the first time in weeks. He’s timetabled to go every Monday and Friday but has consistently refused. Even though he always enjoys it when he’s there and works hard.

Apparently he’s been interested in the decorators, carpet fitters and electricians who’ve been working at the unit for the last few weeks. Yesterday it was turn of the gardeners.

“You hear that sound LB?”, asked his support worker.
“Yes,” said LB.
“What is it?”
“Lawnmower.”
“No, it’s the sound of men at work.”

And that was it. Bowl of porridge (or two) and off to work. Beautifully done.

 

‘Am I mainstream now Mum?’

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We passed the 100 day mark this week. 100 days. 100 days of incarceration (though not according to some involved in this story who insist the locked door isn’t stopping LB leaving the unit). Let’s park that detail for now. And the emotions associated with this experience.

Leaving sounds are being made. Most vocally by LB. The slow wheels of social care are groaning into a ‘lets talk about potential provision at some vague meeting at some unspecified point in the near-ish future’ position’. I suspect (sadly) this may be quite something in social care activity terms in the case of young dudes like LB.

Incarceration came about because there was no care or support available. This (incarceration) has given us – er, I’m making some unsubstantiated assumptions here that Goffman would possibly be proud of – a slightly better position in terms of access to support. I’m less than optimistic about what that support might look like, given anecdotal and other information, but the bar is set so low from where we are, support of any shape that actually supports, is progress.

Reading between the lines (because nothing is transparent here) unnamed people (in health/social care/education?) are aware that LB is ready and in need of support to enable him to be released from the (I’m assuming) costly provision he’s been an inmate of for the last 100 or so days. Not that he’s locked up or anything.

Now there’s the rub. For the first time, we’re insisting on effective and appropriate support. This position makes me feel slightly heady, slightly hysterical, hugely enraged but mainly sad.

But hey. What about LB? How’s he doing?

Three things jump out this week.

1. He attended the ‘feelings’ group which was progress after the first meeting when he turned up, gave everyone the finger and left.

2. He’s asked me repeatedly this week if he’s mainstream now.

3. When I ring and they pass the phone to him, he has a nifty exchange with me – ‘Yeah, right’ ‘Yeah, cool, see you then.’ ‘Right, yes, cool, yeah’.

I’d take these three things as a sign that there is some shaking down in his mind of who he is, and what he wants.

C’mon social care (if you hold the power here). Let’s act on that and create him a space in which to live productively. And, while I’m at it, can I chuck back into the mix the feelings of siblings who are offered no support, and, if under 16, not allowed to visit their brother or sister on site?

It shouldn’t be like this.

Squashing, starving and filling the dishwasher

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LB wants to come home. And we haven’t got support yet to have him home. The care manager is looking into options. The unit have pretty much reached the end of the road in terms of helping him. They’re upping his activity level, encouraging him to empty the dishwasher and creating some social stories.

An email from the care manager last week states;  “There is a meeting currently being arranged I understand it’s the 8 July but no time has been set yet to discuss in more detail this option [support].”

Eh?  Seriously? July 8th? No time set?

Just in case anyone has forgotten, this is an 18 year old young dude. How long is it going to take to put some sort of appropriate support in place? To enable him to come home? What value is being attached to his life? [Well I’d guess crap all to the last question].

At the weekend, LB succumbed to bear hugs from both Rosie and Owen and, just as uncharacteristically, said ‘I miss you so much’.

Heartbreaking.

Today when I visited, his room had been painted. All the posters, photos, drawings and detritus built up over the last few months, were removed and piled up on a cupboard. He was kneeling on the floor. Flicking through a truck magazine on his bed. Surrounded by white walls and nothingness. Even his unwanted, unsought after ‘space from home’, was open to destruction. Timetabled to fit with some tendered/purchase ordered, person discounted process. He wasn’t happy.

It’s as if any semblance of family life, of anything and everything we’ve tried to create and achieve (including filling the dishwasher) is at the mercy of some peculiar and arbitrary non-space between health and social care, between learning disability and mental health. A space created through the provision of no effective support/care and mediated through a bizarre emphasis on  ‘choice’, thoughtlessness and the vagaries of what’s called “service provision” despite not really offering a ‘service’.

In one of those funny twists of fate? coincidence? general shite? I got an email reminder today about a new university wide autism interest group. The first meeting is on Thursday afternoon. On the distribution list was Dr X (who I’ve now re-named Doc Dire). The one who suggested we did the hunter gatherer diet and holding therapy all those years ago. There is no evidence to support the former (still) and there are, according to Autism Research, “numerous personal accounts of the damage caused to people with autism and other conditions” in relation to holding therapy. So, the advice from the experts* from yesteryear was to starve LB and squash him. And now he’s waiting in limbo, for some faceless people to “set a time” to discuss future support “in detail”.

Marks out of 10 for health and social care provision over the years?

Let’s not go there.

*The other advice from Doc Dire was to avoid support groups because they were just filled with a bunch of moaning women. Hilarious.

Choice, cake and a chat group

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ryan5-306A couple of weeks ago, a support group for unit patients was set up. LB received an invitation to attend this group which was to be held on the Friday afternoon in the living room. That evening when I visited, I asked the staff member how the group had gone. Bit of a disaster, it turned out; everyone chose not to attend.

The choice agenda in practice. Kind of hilarious.

The following week, the group ran again, this time with the addition of cake. LB turned up, ate cake and chatted. A lot apparently. Of both.

The group is now called the Cake and Chat group. Well, for LB anyway. I’m not a big jargon person (I hope), but I think this is probably a rocking example of person-centred thinking.

 

 

Losing count – around Day 90

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At the moment I feel a bit beaten with knowledge of awful practice/terrible processes in the broader ‘learning disability’ world and the implications of these for people (in social, economic and health terms). Aside from research evidence, I know a lot of young (and older people) whose lives are, at best, less than adequately supported or enabled. A Facebook transition parents forum (I largely lurk on, sorry) consistently details examples of poor support, battles and misery. For example, from three days ago;

Nothing gets easier. R is suposed to be leaving school officially end of June but we have no agreed care in place (not my fault). One of the day care places (2 days a week) is having major alterations and have said they cant take him until 15 august and the other day care choice (2 days a week) doesn’t start until 31 July, so I am going to be left looking after R once he has left school on 18 July. Whilst trying to work and also caring for my mum. Jolly hockey sticks!!! They all know R is leaving school,have known for years so why people cant get their bloomin acts together and sort it for him I don’t know. Plus I have to find some part time employees to help with the other day a week and transport to and from respite etc and the bloomin paperwork. I am positively frazzled. And if I hear the words you are no longer responsible for him any more I am going to spit!!!!!

I know I keep saying this, but support is shite or non-existent. Aspiration is a dirty word. Jargon laden processes work to effectively crush young people and parents’ hopes and expectations over time until the most basic/cheap and soul destroying ‘life outcome’ – unproblematic weekly burgers and extensive television viewing [by unproblematic I mean without upheaval or disruption in care provision/budgets] – become the default (or even sought after) position. The independently supported no-life. I’m calling it a life outcome rather than lifestyle because the latter implies some choice. And really, this isn’t about choice. An outcome of the burger/tv existence is, of course (these things ain’t rocket science), the health inequalities detailed in Emerson’s depressing read (and countless other reports).

We took LB for an Indian buffet again today. He was cheerful, very chatty (well largely to himself and, unfortunately, with the waiter*) and ate numerous plates of nosh. He bounced down the Cowley Road after to Honest Stationery and Tesco for some shopping. His good mood disappeared the split second he realised it was time to go back at the unit. (Though he managed not to punch himself in the face today).

He wants to come home. We want him to come home. But now we’ve had a break from the pre-unit experience of cobbling together after school cover – through daily shuffling of commitments and working late into the evening (and trying to ineffectually defuse anxiety) – we want effective support in place first. Not a big ask? Nope, you’d think not.

But what has also emerged loud and clear through the knowledge we’ve gleaned from various sources (most importantly experiential sources) is that not only is there a paucity of support options forget aspirations, silly, but once any form of ‘support’ is in place, possible alternatives disappear. One friend spent six years trying to move her daughter from an inappropriate supported living space, nearer to home.

I’m beginning to feel more human today after several disturbed nights this week. The Care Plan Approach meeting left me with a fear that LB would be dispatched to any available ‘room’ in any craphole provision by the social care/health machine. That he would “choose” to move to [fill in the location here] to live with his peers, eat burgers and watch tv. For the rest of his shortened through an unhealthily lived life. This fear, in some ways, works to make a ‘local’ version of this no-life infinitely more appealing.

I’m beginning to think that our experiences of learning to live with a vibrantly different child (in good and sometimes not so good ways), that originally sparked the writing of this blog, have been transformed by the sledgehammer experience of “transition”. The equivalent of some kind of crap horror/slasher low budget film that you can’t wait to switch off. If you have the choice.

*Unfortunately given his new 1970’s type sit’com’ type Indian accent in asking for his coke.

An independently supported no life

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Full weight of mental health/learning disability bureaucracy/uncertainty yesterday, with LB’s CPA (Care Plan Approach) meeting. Anxiety was compounded by the rumour (don’t ask) that a CPA meeting was linked to discharge. Eh? Discharge? After the effective deskilling implications of the “choice” agenda for both him and us over the past months?

Adding to the general mix of uncertainty, on Sunday we went to London (one of LB’s fave and regular, pre-unit, activities), organised optimistically with thoughts of his possible impeding discharge in mind. After a good day hanging out, he punched himself so badly in the face on the motorway home that his nose didn’t stop bleeding for nearly 20 minutes.

Discharge seemed to be the implicit focus of the meeting based on the fact there is little more to be gained from his stay there. If there are no answers emerging through this process, who do we turn to? Er. Mmm. Good question. I suspect the answer to this, for the health and social care world, is twofold; 1. More drugs. 2. Some ‘independent supported living’ gig in which LB watches tv and YouTube all day while underpaid and untrained staff scratch their arses. A type of drugged up independently supported no life.

Anyway. Back to the CPA. Jan Sunman from Oxfordshire Family Support Network, with the support of Fran Steep, introduced a person centred dimension to the meeting. With varying levels of engagement and resistance. This disrupted proceedings healthily, making visible rigidity and entrenched expectations. It also enabled us to move beyond a 20th century medical model of learning disability and look at LB as an individual and not a set of behaviours. LB pitched up and made a contribution, muttering under his breath ‘this is bollocks’. Love him.

Anyway. There was no discharge date. Well not one we know of. Instead his activity level is to be increased, including some chores, to bring him back to a level where he’s able to do more than watch the tv all day. In the meantime, we will grub around trying to find some meaningful support. It shouldn’t be this hard.

The walk and the talk

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Yesterday I got home about 7pm. I rang the unit to ask if LB wanted me to visit that evening or today. I don’t feel I have to see him every day, but I like him to know that we’re around.

The staff passed LB the phone and I asked him the question.

“Today“, he said, straightaway.
“Are you sure?” I asked,one eye on a bottle of wine chilling in the fridge.
“Today, Mum, today“, was the firm answer.

When I turned up at the unit, the staff were surprised to see me. He’d given the phone back to them and said I wasn’t coming. Funny. Or is it?

The unit team have produced a communication care plan for LB which is stuck on his bedroom wall. The first objective is;

  • The family need to phone if they want to come. If LB doesn’t want them to come, staff to suggest to try again on a different day.

Mmmm.

The Department of Health only days ago published a joint statement with various partners about post-Winterbourne care for learning disabled people, which included a recognition of the learning disabled people in other NHS-funded hospital care. A commitment was made in the Winterbourne View concordat “to ensure that by 1 June they will all have had their care reviewed and a personal care plan developed, built around their particular needs, taking into account the views of their family carers”. [italics added]

Now, these things (as usual) ain’t rocket science, but I would have thought LB’s communication care plan could have started with any one of a billion objectives that would support and facilitate his communication with others. Starting with this one is kind of problematic to me, as it sets us up as a problem, or an obstruction to LB’s development. An issue that emerged in the very early unit days.  Given that only a few months ago, LB was a typical teenager, living with his family, I’m not sure what sense he makes of it, which may be why he told the staff I wasn’t coming, having told me I should. The communication plan is on fire, clearly.

But then, as with most of these things, there is a helluva lot of talking the talk, but little walking the walk. It doesn’t matter what grand statements are made at the top, if they ain’t going to translate into practice. And the irony is, I/we/carers are forced to become ‘problematic’ to try to get some walking done.

Choice anyone?

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