title: Huntington's disease: seldom seen--seldom heard?
abstract: OBJECTIVE
  To ascertain the needs of people with Huntington's Disease (HD). HD is a complex disease which does not fit neatly into either physical or psychiatric service provision.
  
  
  METHODS
  Structured questionnaire interview of both affected individuals and carers. Participants were recruited through the Fife branch of the Scottish Huntington's Association and interviewed by an independent researcher. Fifteen affected individuals and sixteen carers were interviewed. Levels of stress were measured using validated questionnaires, HAD (Zigmond & Snaith, 1983) and PSS (Cohen et al, 1983).
  
  
  RESULTS
  A range of perceived difficulties for both people with Huntington's Disease and carers were highlighted as were gaps in service provision. Services were at best ad hoc and mostly "reactive" in nature.
  
  
  CONCLUSIONS
  HD is a disorder of families and it is not unusual for more than one family member to be affected. There is therefore an increasing burden of care falling upon a small number of individuals who may themselves be at risk of developing the disease. Gaps in service provision need to be addressed proactively to facilitate a quality of life for individuals and carers. In the experience of the Scottish Huntington's Association, the results of this survey reflect the situation throughout Scotland.
authors.affiliation: Department of Clinical Psychology, Fife Primary Care Trust, Stratheden Hospital, Cupar, Fife.
authors.forename: K
authors.initials: K
authors.lastname: McGarva
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D006816:Huntington Disease / Q000451:nursing*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D012606:Scotland; D012944:Social Support; D011795:Surveys and Questionnaires