title: Participation in arranging continuing health care packages: experiences and aspirations of service users.
abstract: OBJECTIVE
  This paper examines patients' and carers' experiences of receiving community health services, and considers the degree of patients' participation in the management of their continuing care.
  
  
  BACKGROUND
  Care management, advocated for many years as a way of ensuring appropriate and coordinated care, emphasizes the involvement of patients and carers in care planning. Evidence suggests that such involvement is unusual.
  
  
  METHODS
  Semi-structured interviews were carried out with 99 continuing health care patients and/or their carers.
  
  
  RESULTS
  A few informants had willingly chosen to be active in arranging and coordinating their care, and a few others, who did not take an active role, were very satisfied with the services which they received. The majority, however, were not satisfied, feeling unclear about how their needs had been assessed and how services had been arranged. They were mostly disappointed by the absence of information and by the lack of regular contact with NHS and/or Social Services personnel. Some had felt compelled to become proactive in order to ensure that the care provided was adequate.
  
  
  CONCLUSIONS
  Community nurses are valued by patients, and are well placed to be care managers. However, less qualified staff are also able to offer the regular support and information which patients want and value.
authors.affiliation: Health and Community Care Research Unit, University of Liverpool, Thompson Yates Building, Quadrangle, Brownlow Hill, Liverpool L69 3GB, UK.
authors.forename: S
authors.initials: S
authors.lastname: Abbott
authors.forename: L
authors.initials: L
authors.lastname: Johnson
authors.forename: H
authors.initials: H
authors.lastname: Lewis
mesh_terms: D000328:Adult; D019090:Case Management / Q000458:organization & administration / Q000592:standards*; D003152:Community Health Nursing / Q000458:organization & administration / Q000592:standards*; D003153:Community Health Services / Q000458:organization & administration / Q000592:standards*; D004739:England; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D015403:Nursing Evaluation Research; D010358:Patient Participation; D017060:Patient Satisfaction; D013222:State Medicine / Q000458:organization & administration