Excuses, delays, death and social murder

George Julian has taken on the grim task of working her way through responses to Freedom of Information requests she sent to every Integrated Care Board (ICB) in England. [The words ‘integrated care board’ ratchet up my snooze button so I’m trying to stay jiggy writing this, not succumb to the malaise and weariness these terms generate.] George asked them for their latest Leder data and publication plans for their next reports. She was trying to find out the state of play with the data that has been collected by each ICB since the data included in the latest (2023) Leder report (published in Sept). Each ICB feeds its data/reports to the mothership now based at Imperial College under the quiet (silent even) steer of Prof Strydom.

[I took a trip down blog memory lane and found this post about the 2017 Leder review, also published late and covered up. There is form here. Depressing to note the publication of the review generated live national news coverage then. Now it’s as if someone has left the report on the returned book shelves at an unmarked local library.]

So what can we conclude from the ICB responses to the Leder process?

  1. Rumours of changes to the Leder programme.
  2. No dosh to do the work effectively and an associated lack of staff with dedicated time.
  3. Problems with systems, accessing and uploading data. Outages and smoutages.
  4. ICB restructuring has worsened the process. [There’s always a restructure to be had].
  5. Delay, delay, excuses, excuses and a further muddying of report years and deaths reported.

It’s fair to say the Leder process has erased any consideration of the people who died. It’s a clunky, dilapidated conveyor belt of ‘notifications in’, ‘complete reviews’ out and a growing number of unfinished reviews. A dogs dinner. A flawed process which has descended into farce. Hints and whispers of ‘this process is shite’, ‘who cares’, and ‘I don’t want to do this’ foot stamping.

And then chillingly Dorset report: “Approximately 90% of all reviews have identified little or no significant learning in the last year, which raises the question of the value of completing a review for every case.”

Get that sledgehammer out Dorset and smash the remaining bits of humanity, respect and reason for trying to learn from the premature and often avoidable deaths of people with learning disabilities and/or autistic people.

There’s no new learning, people are gonna die cos we ain’t changing shite so let’s just stop reviewing every death.

And there I was, literally a month ago, publishing a book about the social murder of people with learning disabilities.

An independently supported no life

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.