When to Get a Feeding Tube Fitted

It is advised that people with MND should get a feeding tube fitted while you are still fit and healthy, so that it's ready to use if or when you need it, however it is 100% your decision.

Having a feeding tube inserted can seem like a scary thought. Fraser, from West Lothian, shares his own real life experience of getting a feeding tube inserted and why it was important for him to get his tube fitted while he was still fit and healthy.

MND may cause problems with swallowing, chewing and hand function, all of which are necessary to feed ourselves and swallow food and liquids safely. If MND is reducing these functions, your MND Clinical Specialist, Neurologist or Respiratory doctor may advise you to think about having a feeding tube inserted.

What is a feeding tube?

A feeding tube is a short tube that is fitted directly into your stomach to allow fluids, liquid food and medication to be delivered directly to your stomach bypassing your mouth.

You will hear it called many names and these names refer to the method by which they are inserted e.g. PEG (Percutaneous Endoscopic Gastrostomy) or RIG (Radiologically Inserted Gastrostomy). There may be a slight regional variation in methods of insertion and your local team will guide on this.

Why should I get a tube fitted?

MND can affect your ability to swallow making it difficult to eat and drink. This can lead to dehydration, weight loss, and constipation. If you are advised to consider getting a tube fitted it will be because the MND team believe this will help your quality of life and prevent problems such as choking on food and fluids, and weight loss.

Around 33% of people with MND in Scotland have a feeding tube inserted (data from CARE-MND). It is advised to consider having the feeding tube fitted before it is necessary. This is because it is better to have the procedure carried out while you are fit and well, and before breathing muscles are affected. Some health boards in Scotland have clear procedures on when they will not insert a feeding tube due to increased risks to health, or they might have significant waiting lists for the procedures. On these bases it is recommended to consider having your tube inserted before you need it. 

Can I still eat and drink?

Yes, as long as you are safe to do so without choking on liquids or food. Your Dietician, Speech and Language Therapist and MND Clinical Specialist will help advise you on this. In the early stages, many people use their tube to “boost” daily nutritional intake or fluid intake and then move to more of a tube feeding regime if they continue to lose weight or choking on oral intake becomes a problem.

Will I have to go into hospital?

Yes, you will be admitted the day before the procedure and depending on where you live may stay in hospital for 1-4 days.

How do I look after the tube?

You will be shown how to do this by the hospital team, and be supported by local community dietetic, district nursing or enteral feeding teams. You will be shown by your local team how to care for your feeding tube, however it may include turning the tube round twice a day, keeping the area around the tube clean and flushing water through the tube with a plastic syringe. You may need a family member or carer to assist with this.

What happens when I need to use my feeding tube full-time?

Your local community dietetic will advise on when and how to use your feeding tube full-time.

Find out more 

For further information, please contact your MND Clinical Specialist.

 

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