If you have MND, the following resources can help you make decisions about therapies, treatments or care. Often called patient decision-making aids, this type of information is designed to help you understand the choices available and how these might impact you and those close to you.
“I need someone to help me to decide about choices
at the moment...” - Person living with MND
MND Checklist
This is an interactive form to help you make decisions with your condition and think ahead with MND. It may help you to avoid urgent situations. An action plan is included to help you list areas that may need discussion with an appropriate health and social care professional. You can also order this as a printed booklet, which can be filled out by hand, from our MND Connect helpline.
See also references to forms in the next drop-down as further ways to raise awareness of your needs.
What do all the words and initials mean?
Sometimes the words and acronyms used by health and social care services can be confusing, so we have provided lists with explanations to help give a basic understanding of what they all mean.
Decision-making information resources
Decision-making information sheets:
- 7A - Swallowing difficulties
- 7B - Tube feeding
- 8A - Support for breathing problems
- 8B - Ventilation for motor neurone disease
These sheets are also available in other languages. You can find our full range of information sheets and guides on our information resources page.
Information sheet 14A - Advance Decision to Refuse Treatment (ADRT) and advance care planning
Guidance on planning for future care and how to create an Advance Decision to Refuse Treatment (ADRT). This sheet includes a sample completed form and a blank form to print and fill in, if wished. You can also download an interactive version of the form to fill in on-screen.
Download the information sheet
End of life: a guide for people with motor neurone disease
Our comprehensive and candid guide helps people with end-of-life decisions and opening difficult conversations with family and professionals. You can download this guide in full or by section. You may wish to look at our introductory flyer, which explains the type of content inside the guide.
Gastrostomy tube - is it for me?
Researchers at Southampton University have developed a web-based patient decision aid for people with MND considering a gastrostomy tube. It aims 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.
myBreathing
Developed by SITraN – the Sheffield Institute for Translational Neuroscience and made in collaboration with people living with MND, their videos help explore decision-making about assisted ventilation and how it is used in daily life.
myMNDgenetest
Developed collaboratively by the Universities of Sheffield and Leeds, alongside families affected by MND, neurologists, genetic counsellors, and input from the MND Association, myMNDgenetest is a research-based tool designed to support people living with MND in making informed decisions about genetic testing.
MyTube
Developed by Sheffield Institute for Translational Neuroscience (SITraN), MyTube is a useful online resource containing short videos and information about gastrostomy to help people with MND learn more and make decisions about the intervention. It features both health professionals and people with MND discussing their experiences.