Connor’s death at an NHS unit was entirely preventable. That’s why I started a campaign to change the way people with learning disabilities are treated

Getting accountability or justice for Connor’s death in Slade House assessment and treatment unit was to be a gargantuan task as Southern Health NHS foundation trust continued the fight to protect its reputation. Nearly four months after Connor (nicknamed Laughing Boy), 18, had been found unconscious in the bath at the unit after he’d had a seizure and drowned on 4 July 2013, the trust commissioned an independent investigation into what happened. Our concerns before its publication were stacking up, partly through the careful scrutiny of documentation from trust meetings and commentary from a growing number of people on social media. This group, which became known as “Team LB”, included George Julian, a freelance knowledge transfer consultant, members of Oxfordshire self-advocacy group My Life My Choice, and professor Chris Hatton who published a bespoke blog, Data for LB.

Many more people offered support through my blog and via Facebook, and some time in February 2014 these streams coalesced into a #JusticeforLB campaign with a blog, hashtag and Twitter feed. It was followed by social workers, students, academics from a range of disciplines, self-advocacy and advocacy groups, journalists, documentary film-makers, charities, health professionals, parents and carers, and data protection and human rights specialists. This diversity was to be a great strength.

Related: NHS trust ‘truly sorry’ about death of teenager Connor Sparrowhawk

The campaign was a distraction, countering the constant companions of despair, blackness and heartbreak

Related: Connor Sparrowhawk: no risk assessments before teenager’s death, tribunal finds

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