Here, people living with Motor Neurone Disease (MND), their family members and health professionals talk about what it is like to live with Tracheostomy ventilation (TV).

We talked to 14 people with MND who use TV and 16 family members who support, or have supported, someone with MND to use TV. A tracheostomy can affect the ability to talk, so some of our conversations with people with MND took place via email.

The people we spoke to told us about how they came to use TV, its benefits and challenges, the care needed to support everyday life, and the impact of TV on their quality of life.

What is tracheostomy ventilation (TV)?

Over time, MND can cause the muscles in the chest to weaken, making breathing difficult. When this happens, a ventilator machine can be used to support breathing. In the UK, non-invasive ventilation (NIV) is commonly used by people with MND who need help to breathe. NIV uses a mask over the mouth and nose, or just the nose to support breathing by increasing the flow of air to the lungs. NIV can help people with MND to live longer.

Some people are unable to tolerate NIV or as the disease progresses, they need to wear the mask all the time, for some this can be difficult.   For these patients, tracheostomy ventilation (TV) can be an alternative way to support breathing. This uses a tube into the windpipe, placed under anaesthetic by a doctor.

A person with MND can become reliant on their ventilation. Discussions about withdrawal of ventilation are important before they start to use ventilation. This helps the person understand what will happen if they wish to stop using this breathing support in the future.

Tracheostomy ventilation (TV) may not be suitable for everyone who has MND and is not always offered to people with MND in the UK. Until now, there has been a lack of information on what living with TV in the UK is like for people with MND and their family members.