Huntington's disease--falling through the net.

Abstract

A survey was undertaken in Leicestershire of 25 carers of patients suffering from Huntington's Disease. The needs of families suffering from a late onset hereditary disease cross many service boundaries, thus providing a challenge for service providers. The results of the survey show that the service provision for people caring for patients with this disease are poor, particularly the availability and difficulty in access of some services. Two of the carers' most basic needs were for better residential care for their relatives and access to a source of long-term follow-up.