Abstract

The National VOICES survey of bereaved people told us that for many people in Lincolnshire palliative and end-of-life care was not meeting expectations.

In 2012 a bereaved person began conversation with Lincolnshire West Clinical Commissioning Group about the care his wife had received. His insight highlighted how vital a good understanding of patient experience is to informing and influencing system wide change.

An earlier study using St Barnabas volunteers evidenced that the use of volunteers in collecting data, in a peer to peer exchange, provides unprecedentedly rich information.

In November 2014 we drew this learning together to launch the Public and Patient Participation Project, latterly referred to as “Talk to Us”. Since this time two further CCGs have joined the project.

The principle behind Talk to Us is very simple, patients or bereaved carers who have self-nominated talk to volunteers who record their experiences. The conversation is led by the participant; it really is about their experience. Once the conversation has been concluded the volunteers think about what they have heard and how it relates to the Quality Standards for end of life care for adults (QS13). The role of the volunteers should not be underestimated as it is their careful support that draws out the experiences without the use of questions that might risk influencing the direction of the conversation.

The written account is used by the CCG Quality Lead to inform and influence system wide improvement. The challenge has been to retain the narrative as this is where the impact lies. Sharing the narratives has ignited change where data would have had little impact.

29 recorded experiences which have resulted in action will be discussed at a Stakeholder event in June 2016 prior to the publication of an impact report.