Thread by @GeorgeJulian

I don't have the stomach to tweet this yrs Leder report bristol.ac.uk/media-library/… I barely have the stomach to read it. I'm just going to highlight coroners and inquests.

Only 37% of learning disabled people lived beyond the age of 65 in 2018 (85% of general population did)

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I can't wrap my head around that. 63% of learning disabled people die before their 65th birthday, only 15% of non-learning disabled people do.

My gut suggests many more deaths of learning disabled people should therefore be reported to the coroner... that's logical right? 2/

'Of the 1,946 deaths of adults with learning disabilities for which a review was completed in 2019, 32% were known to have been reported to a coroner, a substantially smaller proportion than the 41% of adults and children in the general population who died in 2018' 3/

The other way of saying that is 68% of deaths of learning disabled people were not reported to a coroner. Despite 63% of learning disabled people not living until they're 65. 4/

Half of all deaths of learning disabled people reported to a coroner resulted in a post mortem and less than a third of those notifications to a coroner, led to an inquest being opened. 5/

So we know:

* 63% of learning disabled people wont reach 65
* 68% of deaths of learning disabled people wont be reported to a coroner
* Of the 32% of deaths notified to a coroner, less than a third will result in an inquest

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Which basically means roughly 10% of deaths of learning disabled people reach inquest; despite us knowing for decades that learning disabled people are dying decades prematurely.

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I've live tweeted the inquests of 6 learning disabled and autistic people [@LBinquest @HandleyInquest @TozerInquest @JusticeforCol @JoeInquest and @SashaInquest] I've yet to see a care provider or NHS trust who were responsible for the care of someone wholly, openly engage

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Its no surprise 68% of deaths of learning disabled people aren't reported to the coroner; when the self proclaimed leading voice of learning disability @mencap_charity instruct their brief to reduce the scope of an inquest of someone in their care georgejulian.co.uk/2018/03/13/bri…

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Often families and friends* have to fight tooth and nail to secure an inquest, while the usual suspects call for lessons to be learned.

(*and some care providers, they are out there, many fall into my DMs asking for advice on pushing for scrutiny and they give me hope)

10/

How are we here? In 2020? With decades of knowledge that learning disabled people die prematurely. Just how?

Why is the second #Leder recommendation as follows:

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'Recommendation 2. For the Department of Health and Social Care (DHSC) to work with the Chief Coroner to identify the proportion of deaths of people with learning disabilities (and possibly other protected characteristics) referred to a coroner in England and Wales'.

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If there is any accuracy to the #Leder data then I think we know the answer to that question (10%) and if there is no accuracy then why are we even discussing these perpetual reports and commentary of the same old same old?

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In response to #EveryDeathCounts letters before claim @MattHancock made it clear he was quite content with the current system of death notification. Nowhere is it recorded if someone was learning disabled or autistic, so Recommendation 2 sounds like a non-starter really.

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I've been wavering on the future of my #OpenJustice work but am left feeling that increased scrutiny into the lives and deaths of learning disabled people is needed now, more than ever.

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I heard this morning £5.2million is being invested in the #Leder programme. Can't stop thinking of the many, many different ways that could be used to better effect.

Onwards. /END