This is what Jo had to say about getting involved:
Mydaftlife was one of the first blogs I started following when I joined Twitter just over two years ago. I know two dudes just a little bit older than Connor (LB) and I knew a bit from their parents how hard it is to find the right sort of support. Although I had never met @sarasiobhan I felt as if I knew everyone she wrote about in her blog. When Connor went into Slade House, I imagined that he and his family were about to get expert advice and support from a specialist NHS unit. Like everyone else, I was horrified 107 days later to read that he had died a preventable death. I wanted to get involved in the #107days campaign because we need to make sure that other families do not experience the devastation that Sara and her family have had to go through and to make sure that dudes like LB get the sort of support that makes them feel their lives are happy and fulfilled.
And this was why Lisa was lending her support:
I’d met Sara a couple of times at meetings for a project involving our research units (she’s at Oxford, I’m at the LSE). Last July I was chatting with a colleague about contacting Sara about a work question and she told me the terrible news about LB and told me to have a look at Sara’s blog. I don’t have kids, but still I can’t imagine anything worse than losing one of your children, and for it to be in such a tragic and pointless way is inconceivable. As more and more information became available via Sara’s blog and through Twitter, the situation just became more and more heart-breaking and difficult to believe. It became difficult NOT to want to do something.
Lisa and Jo decided to get involved and support #107days with Lunching for LB:
We work around the corner from each other but met at a Social Care Curry event. Our first real contact was via Twitter about doing something together for #JusticeforLB and #107days. We really wanted to do something crazy and/or dramatic (we particularly liked the bus drawing in the sand!), but plumped for the opportunity to bring people from our research units (from LSE and King’s) for some lunch and informal discussion. Not very crazy, but definitely worthwhile.
Viv Cooper joined us from the Challenging Behaviour Foundation to give us a very compelling and beautifully delivered presentation about why and how families need to be included in the care of young (and older) dudes, and by extension, in our research projects. Viv also told us a bit about Lisa, one of the three stories, alongside LB, in CQC’s 3 Lives report (see below).
Much discussion ensued, with debate about carers and compassion, the place of regulatory inspections and whether they can improve care, and how commissioners should know and understand the quality of services they are commissioning.
We’d like to thank Viv and our colleagues for joining us and we hope that our event helped even just a little to raise awareness of what happened to Connor and the fight for better care for all the other dudes out there and their families.
We were delighted when the Care Quality Commission got in touch to adopt one of the #107days. We believe that they are an incredibly important part of the jigsaw that will bring JusticeforLB and improve provision for all dudes. This is why they wanted to get involved:
CQC adopted today as it coincides with the launch of their new Three Lives report, published jointly with CBF. The report features LB’s story, alongside that of Kayleigh who spent ten years in assessment and treatment units (including Winterbourne View), and Lisa, who was kept for the majority of time in a locked area at an ATU with staff ‘interacting’ with her through a small letterbox style hatch. These stories were shared at an event chaired by CQC Board Member, Prof Louis Appleby and the report is one of the outputs from this event. The report concludes that ‘the quality of provision of care for people with learning disabilities and their families is too variable across England. Services should be community based and person centred, close to family and local contacts. Families should not be excluded from decisions about care’. It also outlines actions that CQC, and others, have committed to take in order to help people in the same situation and it comes with a promise that progress against these actions will be reviewed in Autumn 2014.
Prof Appleby states that’ The care of people with learning disabilities should be a touchstone for the values of the NHS as a whole and how the care system responds to the stories in the Three Lives report should be seen as a key sign of its progress on safety. Everyone involved in services for people with learning disabilities, commissioners, providers and regulators, need to make sure that they put the needs of individuals first and wherever possible provide care close to home.’
Sara is also quoted in the press release that accompanies the report with a call to action ‘Three lives, and three stories that are beyond shameful. It’s time to stop talking and act to change the paucity of aspiration and provision for learning disabled people’.
We hope that all of those who read the Three Lives report, or who enjoyed Lunch for LB today, will reflect on their own role in improving things, and once again we thank you all for your support in our campaign for #JusticeforLB.