The photo

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

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.

Reviewing the review and a masterclass in othering

It’s a funny old time in academia at the mo. COVID-related research funding chucked around at times like sweets at a panto. The typically onerous processes of lengthy, lengthy form filling stripped back to enable speedy knowledge generation and transfer in real time. Action, immediacy, finger clicking are features of a different health and social care research landscape.

In May, the DHSC commissioned Public Health England (PHE) to conduct a review into the deaths of learning disabled people from COVID-19 after concerns were raised about this group. When you die on average 20-30 years before your peers [howl], a focus on how you fare during a pandemic with things like dodgy resuscitation notices, PPE equipment shortages and confusing information, is kind of crucial.

The review was published yesterday.

‘No shit Sherlock’

When I’ve more time and I can bear to, I’ll search this blog to see how many times the word ‘Sherlock’ features. A fair few I suspect. I doubt if anyone with (genuine) engagement and involvement in learning disability related stuff could possibly have been surprised by the review findings. Existing evidence, including numerous reviews, which underpins the path to premature death and impoverished lives along the way is now dense.

Less haste and more speed

Unlike the COVID research funding streams, there was no urgency in publishing this review, or even sharing early findings to start the whiff of essential life saving action. As Prof Hatton asks:

Instead a delay of months. I don’t know. Across decades of learning disability related scandals, horror, tears, rage, campaigning, fighting, the preventable death of our beautiful, funny, son and so many other people, this particular delay – during a global pandemic – cuts deep. There was no urgency. No urgency at all.

Senior and other bods in the Department of (Almost always) Health and (Sometimes) Social Care must have known the review findings back in July/August and ignored them. No one cared enough to say ‘Crumbs, we must act now’.

According to the BBC, Social Care Minister Helen Whately ‘has announced a review of the findings’. A review of the review. Pushing action further out of sight.

Scratching below the surface

The outrage the review generated was (for me) unexpected. There’s no guarantee of interest in the findings of any of these reviews. You only have to do a quick google of Winterbourne View and then Whorlton Hall to see the precariousness involved in trying to generate engagement with documented and even visual accounts of torture, abuse and death making (in a so-called civilised society).

Channel 4 News even led with the review in a substantial piece that included an interview with Ciara Lawrence, a self advocate, giving the story the centrality and authenticity it demands.

Sadly much of the response fell down the rabbit hole effectively created by the presentation of the report content and accompanying DHSC press release. It’s never a good look to be caught out effectively culling sections of the population and the press release in particular worked hard to head this off in the following ways:

  1. The inclusion of a handy and superficial ‘get out of jail free’ clause – ‘people with learning disabilities are more likely to have other physical health problems such as obesity and diabetes’. An early marker to place the blame firmly with people, ignoring the core issue of the impact of the systemic and longstanding disadvantage people experience.
  2. Prof John Newton added further fodder to this ‘faulty stock’ narrative with the statement ’It is deeply troubling that one of the most vulnerable groups in our society suffered so much during the first wave of the pandemic. We must do everything possible to prevent this happening again.’ People are made vulnerable by the actions of others, John. You are in a position of power and influence to do so much more than intermittent and ignorant handwringing about this.
  3. A sizeable chunk of the 214 word press release included a deficit laden description of what a learning disability is(n’t) and the Woeful Whately referencing the ‘cruel disease’ trope. Cementing the distance between the review findings and government inaction.

I suspect much of the publication delay was due to comms meithering.

When the swears no longer work

So what are we left with? I don’t know really. The swears have finally (hopefully temporarily) run out. Calls to bung everyone with a learning disability into the shielding category misses the point. Learning disability is not a medical condition and the issues that demand immediate action are (again) long term systemic failings in health and social care support.

The circulation of ‘the most vulnerable group in our society’ narrative is damaging and disempowering. The latest scandal risks using the pandemic to drag us even further back further from meaningful change. The government are complicit in this with the careful othering woven through their press release. For now I’m left with ‘Don’t make me vulnerable, punk’ bouncing around my head.