title: Epilepsy health consumer groups and charities; how representative of patients are they? The results of a pilot study.
abstract: OBJECTIVE
  In the United Kingdom all health care providers are encouraged to consult with user groups. The submissions of charities and patient advocacy groups to NICE and SIGN are considered reflective of the patient groups they purport to represent, yet little is known about how representative they are. This pilot study was designed to ascertain how many patients attending a hospital based epilepsy clinic were members of such advocacy groups.
  
  
  METHODS
  Patients were asked to complete a brief 9-question questionnaire before they left the clinic.
  
  
  RESULTS
  One hundred and twenty-five questionnaires were distributed, of which 101 were returned. Seventeen percent of patients were members of advocacy groups, with several being members of more than one charity/group. Only seven percent of the respondents had ever been contacted by an advocacy group to canvass their opinions. Seventy percent of patients questioned stated they thought a frank discussion with their physician, or specialist nurse was more likely to influence patient services. Patients with long duration of disease and taking multiple anti-epileptic drugs were more likely to be members of charity/advocacy groups.
  
  
  CONCLUSIONS
  As patient charities in the U.K. are often in receipt of public funds, and actively seek to influence public policy this raises the question of whether they should be required to consult more widely with the people they claim to represent.
authors.affiliation: Edinburgh and South East Scotland Epilepsy Service, Department of Clinical Neurosciences, Western General Hospital, Edinburgh EH4 2XU, UK.
authors.forename: M
authors.initials: M
authors.lastname: Grinton
authors.forename: Y
authors.initials: Y
authors.lastname: Leavy
authors.forename: D
authors.initials: D
authors.lastname: Ahern
authors.forename: F
authors.initials: F
authors.lastname: Hughes
authors.forename: S
authors.initials: S
authors.lastname: Duncan
mesh_terms: D000293:Adolescent; D002608:Charities; D002648:Child; D004827:Epilepsy / Q000191:economics* / Q000453:epidemiology / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D010344:Patient Advocacy; D010865:Pilot Projects; D012017:Referral and Consultation; D012944:Social Support; D011795:Surveys and Questionnaires; D006113:United Kingdom / Q000453:epidemiology; D055815:Young Adult