What is NIV?

Non-invasive ventilation (NIV) involves using a machine and facemask to support breathing.

NIV improves survival of people living with motor neurone disease (MND) by approximately seven months and can also improve their quality of life. NIV can help prevent retention of carbon dioxide by helping more air to flow back out.

The National Institute for Health and Care Excellence recommends NIV be provided to people living with MND. Although recommended, less than half of patients who start NIV manage to use it for at least four hours per day (the minimum required to gain benefit), and of those who do, only half use it effectively enough to gain survival benefit.

In the following video, Debbie Freeman, a Respiratory Nurse, explains what NIV is.

Video transcript

Debbie Freeman explains what NIV is

“There are several treatment options to help you have more effective breathing during the course of MND. Some treatments are aimed directly at your breathing, and some are aimed at helping your cough strength and to manage symptoms. I’ll have a quick look at some of the treatments available but there are films further into this section that will go into these treatments in more detail for you.

Keeping your chest clear is important as your cough strength will also reduce. There are several treatments to help you do this, for example cough assist or breath stacking. Used regularly every day, these treatments can help you keep free from chest infections. They can also help support you if and when you have a chest infection.

There are many medications out there that can also help you manage symptoms such as excessive saliva or secretions and also symptoms of anxiety-related breathlessness. If you speak to your care team, we can find the right medication for you to help create a balance again.

The key option you will be offered is non-invasive ventilation, sometimes called NIV. NIV is a small machine that pumps air under gentle pressure through a tube and a face mask. It helps you breathe more air in and because you breathe more air in, you also breathe more air out and that takes carbon dioxide with it. Because NIV makes your breathing more effective, it can help you feel less tired during the day and some people report that they have more energy after using the machine.

NIV has been shown to improve life expectancy by several months for the majority of people who use it. Although the ventilator may seem like hard work, many people find that the pay-off is worth it as it improves their quality of life.

Take a look at the other films and see in more detail the treatments on offer. By seeing how other people with MND use their treatments on a day-to-day basis, you will be able to make a decision and reflect on what treatments are right for you.”

NIV machines

In the following clip, Professor Chris McDermott, Consultant Neurologist, outlines the importance of using NIV in MND and the need to have a multidisciplinary approach as everyone has a role in delivering NIV and supporting the patient to use NIV well.

Video transcript

The importance of NIV in MND and having a multidisciplinary approach

Professor Chris McDermott

“NIV is really important in motor neurone disease because it is the intervention that can prolong life and prolong good quality of life. It is a complex intervention though, it is not like just giving someone a tablet and telling them to take it, for instance, as we would do with riluzole.

The success of NIV and ensuring that individuals get the benefits that are there to be had from NIV requires a lot of effort, it requires an expert team to support the individual getting the best out of non-invasive ventilation.

One of the key things that came out from the research that we undertook in developing NIV4MND was that everyone has a role, all the different member of the MND and respiratory teams, they all have a role in delivering NIV and supporting the patient to use NIV well. Now that role will be different depending on the skillset of the individual; where they’re coming from and how involved they are may change at different points of the patient’s journey through living with motor neurone disease and using NIV. But I think the key thing is that everyone is involved in supporting the patient to get the best out of non-invasive ventilation.”

Like many interventions for people living with progressive and debilitating conditions, NIV is a complex intervention. This, as well as the complexities of MND, raise challenges for staff delivering the NIV. The success of the intervention relies on both the intervention components and the way in which staff deliver it.