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.