Experts from the University of Nottingham have worked with people living with Motor Neurone Disease (MND), to share personal stories for other people with MND who want to understand what it is like to live with tracheostomy ventilation (TV).
As part of a major study, Dr Eleanor Wilson and Dr Nicola Turner in the School of Health Sciences at the University, have worked with people living with MND, their family members and health professionals, to produce an online resource for people who are considering TV.
The online resource can be found at HealthTalk.org, a website run by the Dipex Charity, that helps millions of people each year to better understand their own illnesses, by sharing stories from other people about their own health conditions.
The project has been funded by the Motor Neurone Disease Association (MND Association).
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) may be an alternative way to support breathing. This uses a tube into the windpipe, placed under anaesthetic by a doctor.
The reason why TV isn't offered as a standard practice is because there isn't a good evidence base for it. Working with the MND Association, we wanted to understand what it was actually like to live with TV to increase the information available to people living with MND, their families and healthcare professionals."
The team talked to 14 people with MND who use TV and 16 family members who support or have supported someone with MND to use TV. The people who the researchers spoke to told them 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. The interviews have been used as videos and transcripts on the site, depending on how people were comfortable with appearing.
"TV is not be suitable for everyone who has MND. We hope, that by hearing personal stories from people who have actually experienced TV, it might help people who are considering it, make a better informed decision that is right for them," adds Dr Wilson.
Dipex Charity Chief Executive Adam Barnett said: "Through healthtalk.org we help people with health conditions feel less alone and better prepared by sharing experiences of people in the same situation. We're delighted to have partnered with the University of Nottingham and the MND Association to add our third resource for people living with MND and their families."
Jennifer Bedford, Head of Information and Professional Development at the MND Association said: "We supported this study and the researchers involved to gain greater understanding of tracheostomy ventilation (TV) for people with MND. It is vital that people with MND are involved in this type of research and we are so grateful that they have shared their lived experience. This provides insight for the MND community and health professionals."
The pages on TV can be found at https://healthtalk.org/tracheostomy
