Less than two weeks ago a report was published on Southern Health NHS Foundation Trust’s website, detailing an independent investigation into the death of 18 year old Connor Sparrowhawk in an NHS hospital. Connor was known as LB, short for Laughing Boy, online. The Connor Report, found that his death was preventable. The report appears very fair, but is incredibly hard to read, I found myself asking out loud ‘how could this happen’ for a couple of hours whilst reading, and regularly since. I blogged my initial thoughts that evening, Discrepancies, Blatant Misses and Gaping Holes and many others have added their thoughts, ideas and commentary on the report which you can read on @SaraSiobhan‘s website. I’d recommend that you start with The Summary and then visit The Report page.
There has been a lot of anger and incredulity expressed on social media over the past two weeks. A twitter account @JusticeforLB was established the day before the report into Connor’s death was published, in less than two weeks it has gained 885 followers. It has shared 3,929 tweets, averaging about 300 tweets a day. Analysis of the account using twitonomy suggests that 69% of content comes from others, shared as RTs, and 18% of content is direct replies – leaving only 13% of tweets being original dissemination of information. Additionally 16% of tweets shared by the JusticeforLB account have been retweeted at total of 1,839 times. In a nutshell this account is active, and steadily gaining momentum.
In addition to the twitter account, the hashtag #JusticeforLB has been in use. Analysis using topsy suggests that the delay by Southern Health in publishing the report enabled a huge spike in usage of the hashtag, which may well have kick started the momentum for JusticeforLB.
The hashtag has been used 10,212 times and there has been a lot of discussion. The orange line is the #JusticeforLB hashtag, the blue is replies to the JusticeforLB twitter campaign account and the green line is replies to Southern Health’s twitter account, altho strangely they’ve only sent 67 tweets in the past month so they are really missing an opportunity to engage here.
In an attempt to engage more people, and widen the conversation from just happening on twitter, a JusticeforLB facebook page was established six days ago. Facebook insights data shows that so far it has been viewed 13,422 times and received 770 likes and 468 people are talking about it.
Now, I don’t know about you, but that seems like some fairly impressive momentum to me. Today @DanSlee shared a blog post about the new CEO of Birmingham City Council and he included this absolute gem of a video from @Sivers which I just had to share here. It’s only 3mins long, First Follower: Leadership Lessons from Dancing Guy:
The commentary on this video talks about leadership and building a movement, the key elements for me were:
> A leader needs the guts to stand alone and look ridiculous
> The first follower transforms a lone nut into a leader
> The 2nd follower is a turning point: it’s proof the first has done well. Now it’s not a lone nut, and it’s not two nuts. Three is a crowd and a crowd is news
> Now here come 2 more, then 3 more. Now we’ve got momentum. This is the tipping point! Now we’ve got a movement!
> Leadership is over-glorified.
“We’re told we all need to be leaders, but that would be really ineffective. The best way to make a movement, if you really care, is to courageously follow and show others how to follow. When you find a lone nut doing something great, have the guts to be the first person to stand up and join in”
I’m going to stick my neck out and suggest that JusticeforLB is building a movement. Sara is not one grieving parent, shouting in pain and angst, she is not one lone nut, she is the leader of this fantastic movement that wants change. This is partly about answers and accountability for Connor’s death, but it is so much more than that. Any JusticeforLB is hollow comfort unless it results in real change.
Change in the way that people with learning disabilities are treated and valued by society.
Change in the health outcomes and life expectancy of people with learning disabilities.
Change in the way that parents, carers and advocates are treated when advocating for their son, daughter, brother, sister, friend or client.
Change in the way that support is commissioned for people with learning disabilities and people are supported to live meaningful lives.
Change in the expectations that are considered acceptable.
If you’d like to see change please join JusticeforLB, this is a movement that needs all the support it can get.
I live in Scotland, and have an 11-year old child with epilepsy, autism and learning disabilities. The transition to adult services looms in the future, and I do not know how different the Scottish system is compared to how “care” is provided within the NHS in England. I suspect, and fear, that the culture of indifference is just as embedded here, too. The SIGN guidelines are open to abuse just as much as NICE guidelines, perhaps.
I have such admiration for what Sara has achieved so far on behalf of her son – she is reminiscent of Doreen Lawrence in taking on institutional abuses.
If there is any way I can help raise the profile of JusticeforLB, particularly from a Scottish angle, I would be only too happy to be involved.
Parents should not have to lead investigations into failing care but all-to-often do, having spent much of their time case managing their child’s support. We have 18 years to plan for each child’s transition into adult services. We don’t have an excuse for not getting it right.