Muscular Dystrophy Ireland

MDI has Family Support Workers (FSW's) based in the different regions of the country, and their role is to provide support to people with muscular dystrophy and their families. This could be in the form of home visits, telephone contact or group meetings, depending on what each person requires and wants.

At the time of diagnosis, there is a need for information about the condition and entitlements from the Information Officer, and support from the local Family Support Worker (FSW). The FSW provides personal contact and support to people with neuromuscular conditions and their families. This includes visits to members in their own homes to give information about neuromuscular conditions, aids and appliances, welfare issues, etc. In many cases, the FSW is the sole point of contact for members so this support service is invaluable. The FSW can also liaise with health care professionals, teachers, social welfare etc. when required, to assist members to access services. They also organise support meetings, to enable members to come together and share their experiences.

As the condition progresses, members may find that they need increased access to aids and equipment; they may also be looking at a change of career if they were involved in a more physical area of work. The FSW can provide support at such times of change. Unfortunately, some types of muscular dystrophy can reduce lifespan and the FSW is there to provide support for the family before, during and after the bereavement. When an individual or family requires counselling, support is available, and the member can then find a counsellor that they are comfortable with.

To access the MDI Family Support service contact MDI’s Information Officer at our the Head office on (01) 6236414 or email info@mdi.ie and she will be able to refer you to your local Family Support Worker.