title: Care management of Creutzfeldt-Jakob Disease within the United Kingdom.
abstract: The purpose of this article is to review the management of health and social care provision for Creutzfeldt-Jakob Disease patients within the United Kingdom. The link between the epidemic of bovine spongiform encephalopathy (BSE) in cattle and the subsequent emergence of variant Creutzfeldt-Jakob Disease (vCJD) in humans during the mid 1990s created new mechanisms for the organization of health and social care for Creutzfeldt-Jakob Disease patients. This article draws on the experiences of two National Care Co-ordinators appointed to manage the care of Creutzfeldt-Jakob Disease patients throughout the United Kingdom, and identifies how additional money set aside by the Department of Health (DoH) is spent to overcome local difficulties in the timeliness or availability of services. The key issues that emerge include the positive benefits associated with care co-ordination and the difficulties encountered in developing flexible and individual care packages within existing health and social organizational structures.
authors.affiliation: CJD Surveillance Unit, Edinburgh, UK. fiona.barnett@ed.ac.uk
authors.forename: Fiona
authors.initials: F
authors.lastname: Barnett
authors.forename: Gordon
authors.initials: G
authors.lastname: McLean
mesh_terms: D003266:Continuity of Patient Care; D007562:Creutzfeldt-Jakob Syndrome / Q000175:diagnosis / Q000451:nursing* / Q000628:therapy; D005102:Health Expenditures; D006801:Humans; D010346:Patient Care Management; D010347:Patient Care Planning; D012947:Social Work; D013222:State Medicine / Q000191:economics / Q000458:organization & administration*; D035501:Uncertainty; D006113:United Kingdom