Decision making tools
People living with MND are often faced with difficult decisions for managing their symptoms and maintaining their quality of life as the disease progresses. Research projects supported by the UK MND Clinical Studies Group have led to the development of educational resources, which are now available to help patients consider which option may be best for them.
Breathing
myBreathing is an educational website about breathing support in MND. It gives an insight into the options available, with a focus on non-invasive ventilation (NIV). Through hearing real life experiences it can support you in making your own choice.
Breathing - tracheostomy ventilation
An online resource has been created to help people with MND to better understand complex ventilation treatments.
Health Talk is a website where you can learn about what it’s really like to live with a health condition by watching other people share their own stories on film. A collection of interviews with people living with MND and their family members has been created, to share their personal stories with other people living with MND who want to understand what it is like to live with tracheostomy ventilation (TV).
Swallowing, eating and drinking
The MND Association has created a web app with information and tips on eating and drinking with MND, as well as a collection of easy-swallow recipes.
Feeding tubes
Up to two-thirds of people in the late stages of MND may have difficulty swallowing. This can lead to coughing, longer mealtimes and cause food to go down the wrong way (aspiration). These effects can lead to recurrent chest infections, poor nutrition and weight loss. People with MND may be offered a feeding tube to assist with these issues. Gastrostomy refers to the opening through which the feeding tube enters the stomach. Educational resources are available online to help patients consider which option may be best for them:
MyTube is an educational website about tube feeding in MND. It offers an insight into living with a feeding tube. There is also information about the potential alternatives. myTube can help you to think about which option may be best for you. The key issues are covered by a range of short films and supporting information.
Gastronomy Choice is an online tool to help people with MND make the decision about whether to have a gastrostomy feeding tube. The purpose of the decision aid is to help people living with MND choose whether they want to have a gastrostomy tube fitted now. If they decide not to go ahead, they may want to revisit the decision later. The decision aid outlines the risks and benefits with each of these options.