What is this?
This site is designed to support my work as a 2017 Winston Churchill Memorial Trust Fellow.
Throughout this fellowship, I have 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 am hoping to look at whether families are involved in the investigation of the deaths of learning disabled people, if they are how that happens, and if they are not what other options are available to them.
I will use this site to support my work and document my progress. I will attempt to incorporate 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 am 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.