This certainly caught my attention on Twitter today. We all hear about NSA and GCHQ thanks to Edward Snowden's important leaks. This is just one family's story. It is important to focus on both the abuses of mass surveillance and the effects it has on individual people being violated.
From Sarah's blog post
BBC report on Connor's death February 25 2014
A tailored media response OCTOBER 9, 2014
Son dies. Hospital say no surveillance of the family. FOI contradicts. This is car crash #pr: http://t.co/I7st0gV8JE #justiceforlb
— Dan Slee (@danslee) October 9, 2014
The ethics of health organisations monitoring social mediaLast year, Connor became unwell and was admitted to an assessment and treatment centre. 107 days later he drowned in the bath. He had epilepsy and Sara had noticed an increase in his seizures and alerted staff. But he was allowed to bathe unsupervised. Now her blog is about what Sara is learning since his death.continued (original emphasis, not mine)
Today's post on Sara's blog is about the memo that was circulated the day after Connor's death by the communications department of the health trust, to brief staff about Sara's blog and provide a summary of posts with the aim that it might "help in shaping a tailored media response". Sara obtained this memo today through a Freedom of Information request. It details how Sara's blog had been monitored by the comms team from as soon as they were aware of it in March 2013 shortly after his admission to the unit. It specifically mentions this post in May 2013 just over half way through Connor's admission, where Sara described her distress at realising that Connor had a seizure but not being able to convince the staff that this was the case. Last week Sara was told by the Chairman of the Board that there had been no monitoring of her blog.continued
Link: An excellent post by Tim Turner on the data protection aspect of this social media monitoring.
From Sarah's blog post
Just when you think you’ve waded through the worst of the shite, another FOI request pings in. [From the CCG, not from Sloven]. This one includes the Background Briefing on mother’s blog. Written the day after the day after LB died. And yet they have not 16 months on disciplined staff.continued
a portion from the memoAnd Simon Waugh, Board Chair, telling me categorically last week there was no surveillance…Here it is. No words really.
BBC report on Connor's death February 25 2014
The death of a teenager being cared for at an Oxfordshire in-patient unit for people with learning difficulties was "preventable", a report has concluded.
Connor Sparrowhawk, 18, was found unconscious in the bath at the unit in Slade House, Headington, on 4 July and died the same day in hospital.
A tailored media response OCTOBER 9, 2014
Yesterday, Sara Ryan posted – with understandable fury – information she had obtained via Freedom of Information about monitoring of her blog by Southern Health NHS Trust. It’s difficult to quickly summarise the story of Ryan and her son Connor, but the crucial fact for my comments here is that Ryan writes a compelling blog, which used to be about Connor’s learning difficulties, and which became a heartbreaking and angry chronicle of what she has experienced following Connor’s preventable death in a Southern Health treatment centre.continued
It seems almost distasteful to find a data protection angle in the story, but nevertheless, the cause of Ryan’s anger this week should echo loudly through all organisations that deal with the public, and especially with their Data Protection officers.
Ryan’s blog reports that last week, the board chair, Simon Waugh, told her that there had been no surveillance of her blogging. This week, she received information from the Clinical Commissioning Group that told another story. A report was written by Trust the day after Connor died. The aim was to “help in shaping a tailored media response to the incident and monitoring of potential media interest in the incident“. Always good to get your priorities right.
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