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This paper describes how a group of five older adults with Down's syndrome decided what they wanted from their doctor. The group worked out what they meant by health. The group also looked at what it was OK for a doctor to ask or do. They made lists of these. The group decided that being healthy means being able to do things. Feelings, of being scared for example, are an important part of being ill. Older adults with Down's syndrome are able to say what they want from their doctor. They can be helped to do this by working together in a small group.

Older adults with intellectual disability are at increased risk of a wide range of health problems. Hitherto, methods to assess these problems have been healthcare-professional-led and largely based on traditional medical models. Following a literature review and focus group work we produced a user-led health assessment that was feasible and acceptable. The assessment was administered to 57 adults with a wide range of intellectual disability aged 10 years and over, living in the community. The assessment took a median of 21 minutes to administer and covered user-led themes of participation/ability, nutrition and hygiene/self-care. A principal component representing a user-led general health measure correlated positively with the number of health problems (ρ = 0.54, p < 0.001) and the number of drugs (ρ = 0.55, p < 0.001). Further studies using such user-led assessments are needed to assess whether they can have a wider application. [ABSTRACT FROM AUTHOR]