The final report summarising my observations, reflections and learning from my 2017 Fellowship is now available to download and read. I would like to take this opportunity to thank everyone who helped with my Fellowship, who agreed to speak with me, or introduced me to people, or opened their homes to me. A special thank to Winston Churchill Memorial Trust for recognising that this was an important issue, and funding my Fellowship.
A short film where I present the executive summary and key findings can be viewed here:
What is this?
This site was designed to support my work as a 2017 Winston Churchill Memorial Trust Fellow.
Throughout this fellowship, I had a number of objectives:
- To see first‐hand how deaths of learning disabled people/ people with developmental disabilities in Canada, Australia and New Zealand are investigated with a focus on the involvement of bereaved relatives and families
- To liaise with policy makers, disabled people, advocates, academics, journalists and legal professionals to understand their roles in learning from and preventing premature deaths
- To gain a detailed understanding of actions key players could take to improve experiences and in turn reduce premature mortality of learning disabled people / people with developmental disabilities
- To relay learning in real time via social media e.g. blog posts, Twitter and craftivism to provoke reactions and develop discussions in UK and elsewhere
- To improve practice by sharing final report with bereaved relatives, disabled people and campaigners, academics and the media, and those with a duty to investigate and prevent deaths.
In July 2013 Connor Sparrowhawk, a learning disabled 18 year old with epilepsy, drowned in a bath in an NHS hospital. The trust responsible, Southern Health NHS Foundation Trust, claimed his death was due to natural causes.
This is not uncommon. The 1.14million learning disabled people in the UK die on average 24 years prematurely and their deaths are often ignored by society, the media and the NHS.
Throughout this fellowship I hoped to look at whether families were involved in the investigation of the deaths of learning disabled people, if they were how that happened, and if they were not what other options were available to them.
I used this site to support my work and to document my progress. I incorporated a focus on advocacy, activism, deinstitutionalisation and legal redress as mechanisms of support for bereaved relatives, and methods of improving care and patient safety for people with a learning disability.
Who am I?
I am George. I have worked as a family representative and advocate on a number of independent investigations and reviews into deaths in healthcare provision, and was volunteer campaign manager for JusticeforLB (the campaign seeking accountability following Connor’s death).
In 2016 I worked as a special advisor to the Care Quality Commission’s national review into the way NHS trusts investigate and learn from deaths.