New resource to help motor neurone disease patients with breathing support choices
Professor Chris McDermott and his team from the Sheffield Institute for Translational Neuroscience, worked closely with people with MND and their families to design the myBreathing platform. The resource uses bite-sized learning through short videos, photographs and text. It offers a guide to breathing changes and treatments on offer - from soon after diagnosis and as the disease progresses.
MND, also known as Amyotrophic Lateral Sclerosis (ALS), is a devastating neurodegenerative disorder that affects the nerves – motor neurones – that form the connection between the brain and the muscles.
MND presently has extremely limited drug therapy options. The progressive disease affects the breathing muscles, reducing the ability to breathe and cough effectively. Non-invasive ventilation (NIV) is a form of breathing support shown to improve quality of life and increase survival time. However, many people initially perceive NIV to be intrusive, difficult to manage or think that it will affect their appearance, and therefore delay or decline it.
The emphasis of myBreathing is on choice. The resource enables people to say either yes or no to NIV with a full understanding of the implications of either option. Alongside NIV, the range of alternative breathing support options are covered, including medications to manage symptoms and interventions to support a weakened cough.
Professor McDermott explains "We set out to enable carers and patients with MND to combine their experiences of making decisions with the best medical evidence to develop something accessible. I hope that the resulting myBreathing resource will really help all those who have to make decisions about their breathing support and support them in how to get the most benefit out of the interventions they are using."
myBreathing is the third phase of the myMND project, led by the Sheffield Institute for Translational Neuroscience with the Sheffield MND Care Centre and in collaboration with filmmakers Optical Jukebox and digital designers Ammba. The myTube resource focused on choices around tube feeding and eating support, and won multiple awards from the British Medical Association and Complete Nutrition magazine. This time the collaboration expanded to involve the Manchester MND Care Centre and the North West Ventilation Service, who provide NIV across the North West region.
myBreathing was co-funded and supported by the MND Association. The South Yorkshire and Greater Manchester and District local branch groups hosted feedback events on the project at their meetings. This enabled patients to feedback directly into the research. The Care Information team at the MND Association’s central office are using myBreathing across their own resources, to supplement the detailed written information they offer.
The work was completed in partnership with the MND and Respiratory Care Teams at Sheffield Teaching Hospitals NHS Foundation Trust. MND research at the Sheffield Institute for Translational Neuroscience is supported by the NIHR Sheffield Biomedical Research Centre.
The research forms part of the work of the University of Sheffield’s Neuroscience Institute, which aims to bring academics and scientists together from across varied specialties to translate scientific discoveries from the lab into pioneering treatments that will benefit patients living with neurodegenerative disorders.
The Motor Neurone Disease Association is the only national charity in England, Wales and Northern Ireland focused on improving access to care, research and campaigning for those people living with or affected by MND.
The NIHR BRC is a research partnership between the University of Sheffield and Sheffield Teaching Hospitals NHS Foundation Trust, dedicated to improving the treatment and care of people living with chronic neurological disorders.
The National Institute for Health Research (NIHR) is the nation’s largest funder of health and care research. The NIHR was established in 2006 to improve the health and wealth of the nation through research, and is funded by the Department of Health and Social Care. In addition to its national role, the NIHR commissions applied health research to benefit the poorest people in low- and middle-income countries, using Official Development Assistance funding.
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