Background: Carers who wished to share their experiences with a national working group (the Consumer Group) prepared narratives as a way of identifying areas for discussion.
Methods: The narratives were submitted to one author and subjected to thematic qualitative analysis. The themes were fed back to the Group for discussion.
Results: Five main themes were identified: difficulties in obtaining a diagnosis; acting as an advocate; stresses of caring; practical problems with social care; and emotions experienced by carers.
Conclusions: The narratives provided a means of sharing carers' experiences and creating initiatives for further action by the Group. They have an impact on the people who hear or read them but may also be therapeutic for those who produce them. Narratives can also be a powerful tool in teaching and training, and in identifying areas for service and professional improvement.