BACKGROUND: Information from parents of children with neuromuscular diseases and from the children 16 years later is used to discuss specialist medical care towards this group in view of new treatment possibilities and the Norwegian health and social service reforms over the same period. MATERIAL AND METHODS: Parents of 100 children with neuromuscular disease were interviewed in 1981 about their children's health and their use of health and social services. The interviews were repeated in 1997 with 58 of 68 children still living. RESULTS: A comparison of the sets of information from 1981 and 1997 shows the progression of disease and current marital status of the informers. In 1997 we found that compared with findings from 1981, they had closer contact with local health services and less contact with specialised medicine. INTERPRETATION: Our findings suggest that treatment programmes and better coordination of specialist medical follow-up are needed for people with neuromuscular diseases.