Ongoing monitoring and optimisation of NIV
Timing of follow-ups
Patients should be monitored regularly, particularly during the early stages, as good adherence and effective ventilation in the first month predicts survival.
Monitoring is important for being able to detect and address problems with the non-invasive ventilation (NIV) in a timely manner.
The timing of monitoring will depend on patient need but should be every three months as a minimum. For example, if a patient is started on NIV earlier on then they might not need intense monitoring straight away. However if someone has respiratory failure at diagnosis of motor neurone disease (MND) and requires immediate ventilation, they will require more intense monitoring. This will help to ensure that the patient has adhered well to the NIV and are receiving benefit from the ventilation to avoid further deterioration.
In the following video, Chris and Andrew talk about their experience when Chris started using NIV. Whilst in hospital, Chris found using NIV relatively easy. However, they both found it challenging when she came home as they struggled to get a seal with the mask.
This video highlights the importance of knowing who to contact once established on NIV. Chris and Andrew were able to phone the respiratory physiotherapist who provided advice and guidance on changing the mask interface to make it easier for them to use NIV at night.
“After a few days we got quite down - but our physiotherapist made lots of helpful suggestions.”
Chris, person living with MND
Good practice points
Patients should be told who to contact if they have a query or problem they need addressing.