CIPOLD and the power of stories

Anna Marriott, Research Fellow, Norah Fry Research Centre, School for Policy Studies

Anna Marriott, Research Fellow, Norah Fry Research Centre, School for Policy Studies

Howard Gardner, a psychology professor at Harvard University, claims that stories are the most powerful weapon in a leader’s arsenal. He argues that social scientists have finally caught up with political, religious and military leaders and now realise the power of narratives.

In March 2013 the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) reported its findings to the Department of Health. These were launched at a national conference and since then we have disseminated the findings in a wide variety of ways. It has become evident to me that all the audiences to whom I have spoken respond better to the stories I tell, as opposed to the facts and figures I present.

We learn through stories, they help us to understand issues and they make events and lessons memorable. They have power as they print a picture on peoples’ minds. If you want someone to learn and hopefully to change their behaviour, tell a story that will strike a chord. Stories stay with you because they involve people and how they deal with real life problems and situations.

Our reviews of death through the Confidential Inquiry showed that there were a range of problems around how medical professionals used the Mental Capacity Act which is designed to protect people who can’t make decisions for themselves. If I tell clinicians that it is essential that best interests meetings are held in a timely way then it is not particularly memorable – partly because it seems a very obvious point to make. It is much more memorable if I tell them a true story about a young woman, I call Susan, who died waiting for a potentially life-saving heart operation, whilst medical professionals were trying to find a convenient date for her best interests meeting. Her death may have been avoidable if this meeting had been held sooner. In fact, it was not necessary for there to have been a single meeting. The key point of this story was that the decision maker needed to consider all the different viewpoints. I think that when a clinician next finds themselves in the situation where they are initiating a best interests decision they might just remember this story and stop to think about how urgently the decision needs to be taken and if there is time to convene a meeting.

As a team we thought about innovative and accessible ways to convey our key messages and we met with The Misfits, an award-winning Theatre Company led by people with learning disabilities, to discuss making a DVD that illustrated the main findings and recommendations of our work.

We brainstormed the key messages we wanted to convey and thought about the stories of the people whose deaths we had reviewed before selecting four stories to illustrate those main messages. These covered issues relating to primary, secondary and residential care. It was important to us that the film was an accessible length (no more than 20 minutes) and that the stories could stand alone and be used separately.

We then drafted a script that pulled these stories together. We needed to portray the characters (John, Bill, Karen and Emily) as people with lives and friends and family – it was crucial that they didn’t just come across as a group of symptoms. We worked with the Misfits to ensure that we struck the right balance between the complexities of the messages and keeping it easy to understand. This session was quite challenging because our findings, including the fact that people with learning disabilities die so much younger than the general population, related to these individuals directly. As one of the actors said “this is really scary”.

cipoldThe DVD was formally launched at the Watershed cinema with a showing of the film followed by a question and answer session with researchers and actors. We have a limited number of DVDs to give away and the film can be viewed on YouTube.

Making this DVD was one of the most pleasurable parts of the work we have done over the last year and it is proving to be a very effective way of reaching a large number of people. Over a thousand people watched the film on YouTube within the first two weeks. Feedback has been very positive; for example people have said they will use it for training purposes.

The headline statistics from our work are memorable – for example the fact that men and women with learning disabilities die sooner than the general population. However, such facts do not offer a strategy for action. In contrast, the stories we tell about people whose deaths we reviewed usually indicate what should, or could, have been done. It is hard to dismiss real life stories because of their personal nature and therefore I would argue that stories are a powerful weapon in a leader’s arsenal and that narratives should be used to help research have an impact. Those who have heard the CIPOLD story have told me that they now feel they know John, Bill, Karen and Emily – I am hopeful this means that the messages their stories conveyed will be remembered and that ultimately this will lead to improvements in the care and support that they and people like them receive.

The film can be watched at http://www.youtube.com/watch?v=hQXzcDbaVxc 

Read more about CIPOLD and the project’s key findings and recommendations.

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