The School for Policy Studies in partnership with the Muscular Dystrophy Campaign and the Duchenne Family Support Group conducted the research, which was based on interviews with 40 young DMD sufferers and their families. DMD is a hereditary neuromuscular disease that causes physical as well as sometimes learning difficulties in males.
About one third of the men who were engaged in the study was at home during the day, and did not engage themselves in any kind of education, training or work. Most of the men felt that they had worked hard to find a job and had limited social opportunities.
The 27 year old DMD sufferer Stuart Reid said, “It does seem to be that before you're 16 there is a plan – then you get to a certain age and no one's thought about what happens next. It's as if some people think, ‘Oh you're still around, you shouldn't be, we don't know what to do with you”.
There is a problem of a lack of formal transition services for DMD sufferers, in addition to parent’s dissatisfaction with the support services on offer. About two-thirds of parents had inadequate information about whether the options will be available to their sons in the future. About 80% of the parents reported clinical levels of anxiety and depression.
Report authors David Abbott and Professor John Carpenter revealed that it was really astonishing that young men with DMD faced, such difficulties, in addition to the lack of support that many families were getting.