15. The power of stories

What leads to real improvement in how people with learning disabilities are supported by health and care services? And how do we know that things are getting better, rather than staying the same (or getting worse)? Is more money the answer I wonder? Targeted training? Stronger leadership? Clearer accountability? Better systems? Authentic co-production? Changing attitudes? Trying to work out which pieces of the puzzle matter most sometimes feels like an impossible task.  Everybody I know who does research is doing it because they want to make things better. But effecting positive change over the long-term is not easy. This is something we are grappling with on the DAPPLE project, as we seek to find out how people with learning disabilities are being cared for at the end of their lives, and how this can be improved.  

As our research team prepares to start spending time with people who have been assessed as being in their last year of life, I have revisited Irene Tuffrey Wijne’s ground-breaking book ‘Living with Learning Disabilities, Dying with Cancer: Thirteen Personal Stories’, published in 2010. The book is a poignant account of a three-year ethnographic research study. In many ways it has provided the model for DAPPLE, helping our team to think through the practical and ethical implications of conducting research with people at an inevitably difficult and sensitive time. The book presents carefully analysed data against a set of key themes to inform practice, things such as diagnosis and treatment, and truth-telling and understanding.  

However, what struck me most upon re-reading this book, is that despite its clear, concise and rigorous presentation of the research findings, it was the personal accounts that had the biggest impact. In particular, I remembered the three stories that are presented as full narratives in the first chapter. I was gripped re-reading these stories, and there are elements of each one that I have been unable to shake. I think about Nick, whose world became increasingly small as he was deemed too ‘disruptive’ to go to the day centre that he enjoyed, likely due to increasing levels of pain, which seemed to be poorly managed. Vincent, whose final hours are hard to describe as anything other than horrific, dying frightened and alone. And John Davies, who penned his experience in his own words before he died, writing ‘…if my story can stop someone from getting cancer, who knows…if that helps, then I am ever blessed’. 

The whole book is a powerful and important read, but for me it was those first three stories that really shone a light on what it means to provide people with learning disabilities with compassionate and humane care at the end of their lives. 

So, is sharing stories another part of the ‘change-making’ puzzle in the world of health and social care? I certainly think so – but if you’re not sure then it’s worth checking out some excellent research on the role of stories in supporting practitioner learning, conducted by Nick Andrews and his team at the University of Swansea. The DEEP project has informed my own thinking since I came across it a couple of years ago, particularly the use of the ‘magic moments’ storytelling approach in helping practitioners think through complex situations that require nuance and sensitivity. 

Finally, given this blog post is focused on the importance of stories, I’m going to give a plug to another brilliant book – that of our DAPPLE colleague Richard Keagan Bull – who has published his life story ‘Don’t put us away: Memories of a Man with Learning Disabilities’. 

It’s absolutely wonderful, a tour de force, and in my humble opinion should be read by anyone working with (or considering working with) people with learning disabilities. And as Richard would say, it’s a bargain for under £20 on Amazon (other booksellers available) 😉. 

Written by Professor Liz Tilley, Professor of Learning Disability Studies at The Open University