MDI National Survey 2009 - Findings
In September 2009, Muscular Dystrophy Ireland (MDI) ran a survey that was open to all people with muscular dystrophy and related neuromuscular conditions. This survey enabled people to highlight their experiences in relation to medical services, accessing equipment and adaptations, respite and personal assistance, and education, training and employment.
Neuromuscular conditions affect adults and children, males and females.Most of them are genetic. They are characterised by the progressivI weakening and wasting of the muscles but the rate of this progression and severity of the condition varies according to the specific condition and between individuals. People with neuromuscular conditions require a multidisciplinary approach to their medical care, as well as various aids and adaptations, assistance and support to enable them to live an independent life of their own choosing.
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).
Neuromuscular conditions affect adults and children, males and females.Most of them are genetic. They are characterised by the progressivI weakening and wasting of the muscles but the rate of this progression and severity of the condition varies according to the specific condition and between individuals. People with neuromuscular conditions require a multidisciplinary approach to their medical care, as well as various aids and adaptations, assistance and support to enable them to live an independent life of their own choosing.
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
