People with learning difficulties and their healthcare encounters
This study aims to explore the healthcare experiences of people with learning difficulties and their carers. This area has become highly topical as a result of recent national health and social care policies that have emphasised the social inclusion agenda and the right of individuals to have a say in decisions that directly affect their health and wellbeing. This study exposes tensions between individual and social models in accounting for the healthcare experiences of people with learning difficulties. The decision-making process is complex and traditionally many people with learning difficulties have been judged incompetent to make their own healthcare decisions. However, the recent Mental Capacity Act 2005 proposes that people with learning difficulties should, like other people, be presumed to be competent (to make decisions) unless there are strong contraindicators. This proposition is tested in the study. To capture the voices of people with learning difficulties, particularly those with limited articulacy and no speech, ethnographic and narrative methods are used to include voices that may otherwise remain unheard. These methods were informed by a constructivist approach that involved working as closely as possible with informants in order to reach a shared understanding of their experiences. Recent policy proposals suggest that all parties within the healthcare encounter need to work 'in partnership' and 'collaboratively' to provide a more 'person-centred' healthcare encounter for people with learning difficulties. An attempt is therefore made to deconstruct these ideas and to examine what light they shed on the lived experiences of people with learning difficulties in relation to their healthcare encounters in mainstream and specialist services. The study can be seen as adding to the growing literature about the lived experiences of people with learning difficulties, to narratives about their everyday lives, to a questioning of tacit assumptions by staff about capacity and best interest, and to the power struggles people with learning difficulties continue to face in their everyday lives. The findings also demonstrate how situational and contextual factors mediate experiences, re-emphasising the importance of the social model of disability.