Supporting people with Motor Neurone Disease (MND) by identifying which treatments work best, what helps or prevents people from using them, and how saliva and mucus problems affect daily life, so people with MND and their families can make more informed decisions and receive better‑supported care.
Why is the research needed?
Motor Neurone Disease (MND) is a serious illness that cannot be cured. It causes the muscles to gradually get weaker over time. Many people living with MND find it hard to swallow, speak, breathe, and cough properly. One of the most difficult problems this causes is dealing with saliva and mucus, the natural fluids our bodies produce in the mouth and chest. When the muscles are too weak, these fluids can build up and be accidentally breathed into the lungs. This can lead to chest infections like pneumonia, and can make breathing even harder. There are several treatments available to help with this problem, but we do not know which ones work best.
We also do not know which treatments work best for different people and in different situations, how these problems affect the daily lives and wellbeing of people living with MND and those who care for them and whether people with living MND and their carers find the available treatments helpful and acceptable.
What are we doing?
We aim to identify which treatments for saliva and mucus problems work best for people with MND, their families and their care teams, and to understand how these symptoms affect everyday life. By combining research findings with the experiences of people living with MND, carers and healthcare professionals, we will determine which treatments are most effective in different circumstances, what helps or prevents people from using them, and how these problems affect quality of life and the wider support people need. This will fill key gaps in knowledge so people living with MND can make more informed decisions about their treatment and care.
We will carry out a large, in-depth review of all the existing research on managing saliva and mucus problems in MND. This type of review, sometimes called a systematic review of complex intervention involves carefully searching through published studies to find everything that is already known about a topic.
We will search through eight major research databases to find relevant studies published from 1996 onwards. Two members of the team will independently check through the results to make sure we include the right studies. We will use a computer-assisted tool to help manage the large volume of search results.
How are we working with communities, services and organisations?
People living with MND, their family members, and carers have been involved in shaping this research from the very beginning. Their input has helped us decide what questions to ask and how best to carry out the work. We are also working closely with healthcare professionals, such as doctors, nurses, and therapists, who care for people with MND, to make sure the research reflects the challenges they face in everyday clinical practice.
Alongside this review, we will hold interviews and focus groups with people living with MND, carers, and professionals to develop practical, real-world solutions for managing cough and saliva problems.
We are working closely with the MND Association (MNDA) and will share our findings through their professional networks, events, and support groups.
What will the impact and benefits of this research be?
This research has the potential to improve the lives of people with MND and those who care for them. Problems with saliva and mucus can cause choking, chest infections and increased difficulty breathing, all of which seriously affect quality of life. These issues also place a heavy burden on family members and unpaid carers who often manage these problems day to day.
By finding out which treatments work, this research will help people with MND and their families make more informed choices about their care, enable doctors, nurses and therapists to offer better, more personalised advice, and ensure family members and carers feel better supported. It will also provide evidence that can inform national guidelines and NHS care standards.
What do we have planned for knowledge mobilisation and implementation?
We want to make sure the findings from this research reach the people who need them most — not only other researchers, but also people living with MND, their families and the professionals who support them. For people with MND, carers and the wider public, we will share plain‑English summaries through support groups, newsletters, online forums and the MND Community Research Advisory Network. For health professionals and care teams, we will present our findings at professional events such as the International MND Symposium and share updates through the MNDA’s professional networks and training activities.
To help improve practice and care, we will use our findings to update MNDA information materials, including guidance on managing saliva problems, and contribute evidence to national guidelines such as those produced by NICE. Our aim is to support the development of a national best‑practice pathway for MND care.
Related papers, outputs and resources
Read the related conference paper, titled 'Clearing the way: co-produced solutions to improve the management of cough and secretions in motor neurone disease'
Find out more by visiting the MND Association webpage
Who is involved?
- Lead researcher: Dr Caroline Barry, Norfolk and Norwich University Hospital and University of East Anglia
- Professor Morag Farquhar, University of East Anglia
- Professor Jane Cross, University of East Anglia
- Matthew Hawkes, University of East Anglia
- Charlotte Massey, University of Sheffield
- Helen Copsey
- Emma Larner
- Jen Bedford
Get in contact
Email Dr Caroline Barry at caroline.barry@nnuh.nhs.uk.
