title: A 'real puzzle': the views of patients with epilepsy about the organisation of care.
abstract: BACKGROUND
  Little is known about how individuals who have a diagnosis of epilepsy have experienced healthcare services or their views about how they should best be organised to meet their ongoing needs.
  
  
  METHODS
  Focus group interviews. Individuals with epilepsy were identified in 5 practices in Wales: 90 were invited, 40 confirmed attendance and 19 individuals attended interviews in 5 groups of size 6, 5, 4, 3 and 1 (Table 2).
  
  
  METHODS
  individuals with a confirmed diagnosis of epilepsy, aged between 18-65. The exclusion criteria were learning disability or an inability to travel to interview locations.
  
  
  RESULTS
  The individuals in these group interviews were not 'epilepsy activists' yet they remained critical in extended discussions about the services encountered during their patient careers, wanting more information and advice about how to adapt to problems, particularly after initial diagnosis, more involvement in decision making, rapid access to expertise, preferably local, and improved communication between clinicians. A central concern was the tendency for concerns to be silenced, either overtly, or covertly by perceived haste, so that they felt marginalised, despite their own claims to own expert personal knowledge.
  
  
  CONCLUSIONS
  Users of existing services for epilepsy are critical of current systems, especially the lack of attention given to providing information, psychosocial support and the wishes of patients to participate in decision making. Any reorganisation of services for individuals with epilepsy should take into account these perceived problems as well as try to reconcile the tension between the distant and difficult to access expertise of specialists and the local but unconfident support of generalists. The potential benefit of harnessing information technology to allow better liaison should be investigated.
authors.affiliation: Primary Care Research Group, Swansea Clinical School, University of Wales, UK. g.elwyn@swansea.ac.uk
authors.forename: Glyn
authors.initials: G
authors.lastname: Elwyn
authors.forename: Stuart
authors.initials: S
authors.lastname: Todd
authors.forename: Richard
authors.initials: R
authors.lastname: Hibbs
authors.forename: Ajay
authors.initials: A
authors.lastname: Thapar
authors.forename: Peter
authors.initials: P
authors.lastname: Edwards
authors.forename: Amanda
authors.initials: A
authors.lastname: Webb
authors.forename: Clare
authors.initials: C
authors.lastname: Wilkinson
authors.forename: Mike
authors.initials: M
authors.lastname: Kerr
mesh_terms: D003695:Delivery of Health Care / Q000458:organization & administration* / Q000592:standards; D004827:Epilepsy / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010358:Patient Participation; D017060:Patient Satisfaction; D011787:Quality of Health Care; D014852:Wales