Investigating the deaths of intellectually disabled people: reflections from the #JusticeforLB campaign

When:15 Nov 2017, 4pm - 5:30pm
Venue:Room 221/223, Level 2, John Goodsell Building, UNSW Kensington Campus
Who:Dr George Julian
Investigating the deaths of intellectually disabled people.

On July 4th 2013 Connor Sparrowhawk, also known as LB short for Laughing Boy, drowned in a bath in an English hospital. Connor was 18, a young man with autism and epilepsy, whose death was entirely preventable. The trust responsible for his care swiftly claimed his death was due to natural causes. This is not uncommon. The 1.14 million learning disabled people in the UK die on average 24 years prematurely (CIPOLD, 2013 (PDF)) and their deaths are often ignored by society, the media and the National Health Service (NHS). LB’s friends and family have been campaigning since his death #JusticeforLB to highlight injustice, to seek accountability and to encourage a conversation about the status of intellectually disabled adults as full citizens.

This talk will introduce JusticeforLB, highlight some of the campaign methods used and it’s progress to date. It will situate JusticeforLB within a broader context of UK families’ experiences of health and care providers when their relatives die. It will consider practical ways in which we can all work to improve death investigations, support bereaved families and in turn increase patient safety and reduce premature mortality amongst intellectually disabled people.

Dr George Julian is a freelance knowledge transfer consultant, a Visiting Fellow at London School of Economics, volunteer campaign manager for JusticeforLB and a trainee death doula. She also works as a family representative and advocate, supporting bereaved families with NHS death investigation processes and was a specialist advisor to the Care Quality Commission’s review of how the NHS investigates and learns from the death of patients in its care. George is an avid social media user, a blogger, tweeter, online activist and offline craftivist. She is travelling to Australia as a 2017 Fellow of the Winston Churchill Memorial Trust to explore how families are involved in investigating the deaths of intellectually disabled people #WCMTLD.

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