This survey highlighted the following issues listed below, however click on this link to download a comprehensive and more detailed report on the findings of the MDI National Survey 2009. (File type: PDF, size: 460KB).

• 56% of people with neuromuscular conditions are not registered on the National Physical and Sensory Disability Database
• Adults with neuromuscular conditions are less likely than children to attend specialist medical services for assessment and management of their condition 
• People who do not attend a muscle clinic or neurologist are less likely to be referred to other specialist medical services which have the potential to improve their quality of life
• Overall medical care is generally rated above average but for some there is still a lot of improvement to be made
• 47% of people have experienced delays in accessing essential aids and appliances, with 18 people waiting for 6 months and 28 for one year and over
• Due to difficulty in accessing a Local Authority Grant for 34 people and the high cost of adapting a home, some are living in unsuitable housing
• 22 people need more Personal Assistant hours, a total need of 16,796 extra hours per year
• 115 people rely on family and friends for their care. 30% of adults report that this has had a negative impact on their family relationships
• 30% of people have had a respite break in the last 5 years, mainly at a break or camp organised by a voluntary organisation
• 7 parents report a reduction or removal of the Special Needs Assistant support in schools
• 42% of adults with neuromuscular conditions are unemployed
• 61% believe that living with their condition has negatively affected their ability to earn an income
• 65% believe that living with their condition has negatively affected their quality of life.
• Applying for entitlements, equipment and housing adaptations can be along, slow process