Before starting NIV

Monitoring respiratory function

Patients should be referred to the respiratory team at diagnosis or as soon as possible thereafter.

Early referral aims to allow time to prepare the patient and reduce delays in identifying and treating respiratory insufficiency.

The assessment of respiratory function should be based on the full clinical picture and include:

The timing of respiratory monitoring should depend on the patient’s symptoms and signs, speed of progression and patient preferences but should occur every three months as a minimum. Monitoring respiratory and bulbar function regularly will also help ensure timely referral of patients for assessment of the need for gastrostomy as well as to a dietician and speech therapist for help with diet optimisation.

In the following clip, Rosie Whitehead, a Respiratory Physiotherapist, describes the importance of using a range of tests and assessing respiratory function by looking at the whole picture.

Video transcript

The importance of looking at the whole picture

Rosie Whitehead

“In clinic we use all of those tests together to work out if we think the patient may be starting to have some respiratory muscle weakness. We bring all those tests alongside each other to look at if there might have been a change in their symptoms or change in their FVC - as one in isolation may be due to something else; they might not have been sleeping as well because they’ve got cramps or their FVC might be lower because their bulbar function’s impaired so you’ve not got as reliable a test as you might have done. Looking at everything together is the most helpful way to know if someone needs respiratory review.”

A healthcare professional with appropriate competencies should perform and interpret the tests and expert advice should be sought if there is any uncertainty. Provision of home monitoring, local respiratory testing and telephone consultations can help address barriers to accessing respirator monitoring.

In the following clip, Debbie Freeman, a Respiratory Nurse, explains the importance of taking a multidisciplinary approach to assess the patient’s range of respiratory function.

Video transcript

The importance of a multidisciplinary approach for assessing the whole range of respiratory function

Debbie Freeman

“In clinics, or in the review process, what we would do with patients is assess the whole range of respiratory function of patients. This includes secretion managements, which is really important to get control of (and physiotherapists are very active in looking at respiratory function, helping manage their activities), and cough assist, which helps with managing secretions and makes a massive difference with how they feel generally day-to-day, and can ward off infections in some instances.

We have occupational therapists who look and prepare them for going home with assisted living, and all sorts of equipment that is useful, and how NIV will fit into their home environment. We have social workers who will look at their care packages and what support their family carers may need to help support the patient when they take their ventilator regime home.”

Learn more

To learn about the signs and symptoms to look out for as well as respiratory function testing, look at the following sections:

Good practice points