When could I have a tube?

There is not a set time when to have a feeding tube fitted. The rate that eating and swallowing is affected varies a lot between different people with MND/ALS. It can be a very slow change, or an early symptom. Everyone needs to choose the right time for them, so it is useful to be aware of the implications of this timing. Some initial research has been done that helps understand this timing better.

The ProGas study suggests that having a tube fitted before losing too much weight means people are more likely to stabilise or to regain lost weight. Whereas having a tube fitted later can make the operation more risky and people were less likely to regain weight. To help understand this better, more research is being planned. For a simple one page summary of the ProGas findings see the External resources page.

Whatever decision you make, it is important to understand that your choice is flexible and you can change your mind. If you have a feeding tube fitted, you may reach a point where you no longer wish to feed with it. It is good to start to discuss the range possibilities now with your care team. For instance, you may wish to consider putting an advanced directive in place. See the MND Association’s guide to advance directives in External resources.