Motor Neurone Disease Care at Home
Motor Neurone Disease Care at Home
Living with motor neurone disease means living with a condition that changes constantly. CareLink Direct provides nurse-led motor neurone disease care at home across Sussex and Surrey, adapting to changing needs with clinical care that is thoughtful, consistent and closely managed.
Motor Neurone Disease Care at Home
Motor neurone disease, often abbreviated to MND, is a group of conditions that progressively damage the motor neurones, the nerve cells that control voluntary muscle movement. As these nerves deteriorate, the muscles they supply gradually weaken. The condition affects movement, speech, swallowing and breathing over time.
MND is a progressive condition, meaning the care needs of the person change as the condition advances. Early in the condition, someone may need relatively light support. As MND progresses, needs can become significantly more complex, often including enteral feeding when swallowing becomes unsafe, ventilation support as breathing is affected, and full personal care when mobility declines.
Planning ahead is an important part of MND care. CareLink Direct works with families and the clinical team to think about future needs as well as current ones, so that care can be adapted without crises.
When is specialist care at home the right choice?
You may be considering specialist MND care at home if:
- Your loved one has been diagnosed with motor neurone disease and care needs are increasing
- Swallowing is becoming more difficult and enteral feeding is being considered or has been established
- Breathing is affected and ventilation support is needed or anticipated
- Personal care needs have increased as mobility and strength have declined
- The family needs clinical support to feel confident and safe managing care at home
How our care supports people and families
- Care plans built around the current stage of the condition, with forward planning for changing needs
- Nurse oversight and regular review as MND progresses
- Support with enteral feeding including PEG care as swallowing becomes affected
- Ventilation support as breathing requires clinical management
- Personal care delivered in a way that preserves as much dignity and independence as possible
- Palliative and end of life care support when the time comes
- Coordination with the MND clinic, GP, respiratory team and other specialists involved
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
- Enteral feeding support, including PEG care
- Ventilation support and respiratory monitoring
- Suctioning where secretion management is needed
- Communication support and adaptation as speech changes
- Medication and symptom management support
- Waking and sleeping night care
- Palliative and end of life care
We work closely with MND Association advisers, MND clinics, GPs, respiratory teams and palliative specialists.
Arranging motor neurone disease care at home
If your loved one has motor neurone disease and you are thinking about specialist care at home, please contact us. We understand that things change and that the needs you have today may not be the needs you have in six months. We plan for that from the beginning.
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.
