Muscular Dystrophy Care at Home
Muscular Dystrophy Care at Home
Muscular dystrophy affects different people in different ways, but the need for reliable, expert support is constant. CareLink Direct provides nurse-led muscular dystrophy care at home across Sussex and Surrey, tailored to the individual and built around what they need to live safely and well.
Muscular Dystrophy Care at Home
Muscular dystrophy is a group of inherited genetic conditions that cause progressive muscle weakness. There are several different types, including Duchenne muscular dystrophy, Becker muscular dystrophy and myotonic dystrophy, each of which affects the body in slightly different ways and at different rates.
As muscle weakness progresses, people with muscular dystrophy may need increasing support with mobility, personal care, respiratory function and, in some cases, cardiac monitoring. Respiratory support, including non-invasive ventilation, becomes an important part of care for many people as the condition advances.
Care needs vary significantly between individuals and between types of muscular dystrophy. CareLink Direct builds each package around the specific person, not a standard muscular dystrophy care model.
When is specialist care at home the right choice?
You may be considering specialist care at home if your loved one:
- Has a form of muscular dystrophy with increasing care needs
- Requires support with personal care as muscle weakness has increased
- Uses a ventilator or has respiratory needs that require clinical oversight
- Is transitioning from children’s services to adult services and needs care to continue seamlessly
- Has complex clinical needs alongside personal care requirements
How our care supports people and families
- Nurse-led care packages adapted to the specific type and stage of muscular dystrophy
- Ventilation support and respiratory monitoring where breathing is affected
- Personal care delivered in a way that works with the person’s remaining strength and movement
- Support with mobility, positioning and pressure area care
- Regular review as the condition and care needs change
- Coordination with the neuromuscular team, respiratory team, GP and other specialists
- Continuity of care from a familiar, trained team
What support may include
Care packages are built around individual assessment. Depending on the person’s needs, support may include:
- Personal care including washing, dressing and oral hygiene
- Ventilation support and respiratory monitoring
- Positioning and pressure area care
- Medication support
- Mobility assistance and transfers
- Enteral feeding support where swallowing is affected
- Waking and sleeping night care
- Live-in care where continuous support is needed
Arranging muscular dystrophy care at home
If your loved one has muscular dystrophy and you are considering specialist care at home, please get in touch. We will take the time to understand the specific type of muscular dystrophy, what it means for the person day to day, and what a care package that genuinely supports them would look like.
Registered for TDDI
“Registered to provide Treatment of Disease, Disorder or Injury (TDDI)”, meaning we are approved to deliver complex clinical care at home for people living with serious illness, disability, or injury.
