© British Association of Social Workers
Social Work with Huntington's Chorea
Rosemary Yale qualified as a social worker on the Applied Social Studies Course at LSE, specializing in child care, and worked for 14 years with the London Borough of Wandsworth. Since 1979 she has been employed by the Association to Combat Huntington's Chorea, and runs their Family Counselling Service.
Brian Martindale qualified in medicine at Guy's Hospital and his postgraduate career included a neurology fellowship at John Hopkins' Hospital, USA. He became interested in Huntington's Chorea there and his subsequent training in psychiatry and psychotherapy has led to a research interest in the psychosocial problems of Huntington's families and their children. He was formerly Senior Registrar at the Cassel Hospital, Richmond, Surrey and is now Consultant Psychiatrist in Psychotherapy at the Paddington Centre for Psychotherapy.
Please address requests for reprints to Rosemary Yale, Association to Combat Huntington's Chorea, 108 Battersea High Street, London SW11 3HP
Summary
All professionals with knowledge of patients suffering from Huntington's Chorea (HC) or their relatives, living in a defined geographical area, were interviewed. Our findings show that in spite of multiple psychosocial issues from time of diagnosis, and even earlier, social work was offered at a relatively late stage or not at all. Some important tasks such as genetic counselling were often ignored or mishandled. Lack of knowledge about the issues inhibited good practice. Professionals failed to communicate adequately and, like HC families, experienced feelings of frustration and impotence. We conclude that HC requires a team approach if families are to cope with the complex problems they face, and we make recommendations for a better service.