Health gain through screening — Users’ and carers’ perspectives of health care: Developing Primary Health Care Services for People with an Intellectual Disability

The Primary Health Care Project for People with an Intellectual Disability began early in 1995 in Northern Birmingham to facilitate equal access to health care services for adults with an intellectual disability, and to establish a health screening protocol. This process required an on-going consultation and collaboration between the various services dedicated to people with an intellectual disability: the primary health care teams (PHCTs) and people with an intellectual disability and their carers and families. The aim of the study was to identify the experiences, expectations and opinions of the people using these services. Thirty-one service-users' views were canvassed through focus groups. One hundred and four (non-paid) carers' views were obtained separately. A forum consisting of users, carers and professionals was convened to arrive at a shared agenda for action. Areas where people with an intellectual disability were not given equal access were established (e.g. cervical cytology) and approaches were suggested to improve this situation. The implications of this methodology and its findings are discussed.