2018 Update

It’s 9 months since I returned from Phase 1 of my WCMT travels visiting Australia and New Zealand and I’m preparing for the start of Phase 2 in Canada. This post will capture a few of the developments in the UK in the last year.

I’ve live tweeted two more inquests of learning disabled. Richard Handley’s inquest took place in February 2018. Richard loved theme parks, theatre classes, watching Mr Bean and tickling people’s toes. He’d a mischievous sense of humour and was a much loved member of his family. Richard was just 33 when he died from unmanaged constipation. The coroner founds gross failings, missed opportunities and that Richard shouldn’t have died. He was failed by numerous agencies including his care provider United Response, his primary care practitioners and GP, his psychiatrist, social workers and commissioners at Suffolk County Council and the staff and management at Ipswich Hospital.

In April 2018, Danny Tozer’s inquest took place. Danny was a much loved family member and friend. He was a people person, he enjoyed travel, playing his piano, and being outdoors – running, walking, cycling and horse riding as well as visiting the seaside, pubs and cafes. Danny was just 36 when he died in a Mencap home. The coroner found communication between Mencap, City of York council and Danny’s family was not satisfactory. There was no Deprivation of Liberty safeguard and the Positive Behaviour Support plan wasn’t followed by Mencap staff. It couldn’t be ascertained when Mencap staff had returned to check on Danny but it was likely to be shortly before the ambulance was called; meaning Danny was not checked for over half an hour on the morning he died.
In a very welcome move Dimensions have developed resources to support bereaved families of learning disabled people to know what questions to ask about their relative or friend’s death. These were put together in an attempt to plug the vacuum of help and support available for families. You can access the leaflet and guide from here or click here to open the full guide as a download.
The most soul destroying update is the life expectancy of learning disabled people, and the government’s apathy (alongside what feels like society’s apathy) to real try and address it. Earlier this year the Learning Disabilities Mortality Review (LEDER) annual report was published. It is dated December 2017 and the government didn’t bother to publish it until May 2018, and they didn’t bother to produce a response to it until earlier this month, September 2018. An utterly woeful response at that, Chris Hatton’s analysis is worth a read if you’re interested. Rather frighteningly 1,311 deaths were notified to LEDER in the reported period but only 103 reviews were completed, in spite of this the headline figures are awful, showing an even larger discrepancy in life expectancy than what was found in CIPOLD, 2013.
So that’s the starting point for Phase 2 of my fellowship, an even greater challenge than before, and one for which I remain indebted to WCMT for supporting me investigate.

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