Has the mainstreaming agenda affected the management of the health and health care of people with learning disabilities?

The mainstreaming agenda championed in government documentation such as Valuing People (2001) and Valuing People Now (2007) is based on principles of choice, empowerment and inclusion, and is prolific throughout Learning Disability policy and practice. Service users are encouraged to access mainstream health care services and consequently much recent research on the health and health care of people with learning disabilities has been based within mainstream health services. The current study proposes to address this gap in the literature and explore the impact of the mainstreaming agenda on the management of the health and health care of people with learning disabilities. Three focus groups were carried out with care and support staff, who work with people with learning disabilities. One further focus group was carried out with a group of people with learning disabilities. Vignettes were used as a talking tool to encourage conversation and semi structured interview protocols were followed. The groups were transcribed verbatim and analysed using thematic analysis. The following key themes emerged from the staff focus groups: Roles and responsibilities, Empowerment: support versus independence, Assumptions and beliefs about learning disabilities. Themes of Understanding of health and illness and Responsibility for health emerged from the service user group, which whilst being distinct themes were clearly related to what was discussed within the staff focus group. This was usefully conceptualised in an over-arching thematic thread described as 'the constructed lives of people with a learning disability'. This thread highlighted the interconnectivity of the lives of people with learning disabilities and the people who support them. A misunderstanding by staff of key concepts from policy and organisational rhetoric, used throughout learning disability services, such as empowerment, choice and control, impacted upon the way staff interacted with service users and consequently affected the way service users understood and experienced health and health care themselves. The mainstreaming agenda, whilst being based on solid principles, which should serve to benefit people with learning disabilities, is actually based on principles that staff in the current study struggled to truly understand and implement effectively. This should be considered when examining service development and innovation within Learning Disability Services, in particular in relation to care and support staff who may consider supporting the health and health care of people with learning disabilities as being outside of their substantive role. Further research is needed to explore the differing understanding and application of concepts such as choice and empowerment and if further discrepancies identified, training developed to support staff to effectively understand and apply these concepts in practice.EThOS - Electronic Theses Online ServiceGBUnited Kingdo