National evaluation of NHS genetics service investments: emerging issues from the cancer genetics pilots

In seeking to fulfil the ambition of the 2003 genetics white paper, Our Inheritance, Our Future, to ‘mainstream’ genetic knowledge and practices, the Department of Health provided start-up funding for pilot services in various clinical areas, including seven cancer genetics projects. To help to understand the challenges encountered by such an attempt at reconfiguring the organization and delivery of services in this field, a programme-level evaluation of the genetics projects was commissioned to consider the organizational issues faced. Using a qualitative approach, this research has involved comparative case-study work in 11 of the pilot sites, including four of the seven cancer genetics pilots. In this paper, the researchers present early findings from their work, focusing in particular on the cancer genetics pilots. They consider some of the factors that have influenced how the pilots have sought to address pre-existing sector, organizational and professional boundaries to these new ways of working. The article examines the relationship between these factors and the extent to which pilots have succeeded in setting up boundary-spanning services, dealing with human-resource issues and creating sustainable, ‘mainstreamed’ provision which attracts ongoing funding in a volatile NHS commissioning environment where funding priorities do not always favour preventive, risk-assessment services.

Future Selves: Career choices of young disabled people

There is growing recognition that gaining the views of young people is crucial for understanding issues that affect their lives. However, to date, very little is known about the way in which disabled children, make sense of their identities, and create a sense of their past and their imagined futures over time. This three year study, funded by the European Social Fund, and conducted by Dr Sonali Shah and colleagues at the University of Nottingham, used various methods to explore how physically disabled students, in full-time special or mainstream education, make choices concerning their occupational futures. It identified the factors that shape their educational and career related choices and chances, and explored how social relations, social processes, and social policies influenced the extent to which their aspirations were achieved. This study presents disabled children and young people as critical social actors who are telling their own stories of how social structures and processes shape their choices and aspirations for their future selves. It illustrates the importance of consulting children and young people about issues concerning their lives, and not rely solely on adults’ conceptions of childhood. The young disabled people’s experiences and views can be used to develop a new flexible system which offers the benefits of mainstream and special education, and facilitates young disabled people’s self-determination to make choices to participate in and contribute to their independent futures.