The term “muscular dystrophy” covers a wide range of conditions which affect the muscles, or the nerves that control them. Different conditions affect different muscles, for example in the arms and legs or the heart and lungs. Most of the conditions are progressive, meaning that they worsen over time, affecting mobility and leading to some level of disability. Some of the conditions lead to shorter life expectancy, although the severity of the symptoms and how they affect people is very individual. Whilst there is no cure for muscular dystrophy, there are lots of ways of managing symptoms.
Each clients’ needs are very individual and depend on the type of muscular dystrophy, and the severity of symptoms. Requirements may include clinical support, for example help with the use of ventilators, and emotional support to help individuals maximise their quality of life.
- Client and family care support
- Nurse led services, working in close partnership with the client in the design of their own care plan
- Dynamic care planning and risk assessment to meet changing needs
- Multi-disciplinary team including nurses with an intensive care background and a physio with specialist respiratory knowledge
- Psychological support for the client & their family
- Use of physiotherapists with expertise in re-enablement, passive limb movement and positioning
- Specialist training to incorporate specific care needs, e.g. PEG feeding, NIV, moving and handling
- Liaison with other key contacts, e.g. schools, University, College, work place