Motor Neurone Disease (MND)

Tube feeding (PEGs, RIGs, PIGs) and ventilation

When motor neurone disease affects the throat muscles, people may have difficulties with talking, swallowing and breathing. (See also 'Eating, swallowing and breathing' and 'Speech and communication'). Here we look at some of the interventions which can help, such as tube feeding with swallowing and ventilation with breathing. 

Tube feeding - PEGs, RIGs and PIGs.
Many people living with MND find they can continue to eat ordinary foods for a long time by being careful about what they eat and choosing softer foods, including purees and liquids. If eating and swallowing become more difficult, one option is to have a feeding tube inserted directly through the stomach wall - a PEG (Percutaneous Endoscopic Gastrostomy), a RIG (Radiologically Inserted Gastrostomy) or PIG (per-oral image guided gastrostomy), which is less common. The difference between them is the way they are inserted and the stage of the condition where it is appropriate for the operation to be performed, but the end result is the same. A nasogastric feeding tube (passed through the nose and down the throat) may be used as an emergency measure, but is unlikely to be recommended for long term use.

Not everyone wants to have a feeding tube, and this has to be a personal decision. Discussing the options with a speech and language therapist and dietitian will help people make an informed choice. The MND Association website provides - Information sheet 7B - Tube feeding and 7A - Swallowing difficulties.

Several people we talked to had decided to have a PEG or RIG, though not all were using it yet. People were commonly advised to have it done while they were still relatively fit and before they lost a lot of weight, so they would recover well from the procedure. Several said it was reassuring to know the tube was there ready if they did need it. Some people continued to eat some foods by mouth as well as using the tube.

This woman found the procedure very straightforward and recovered quickly. Some people took longer to recover and a few developed an infection at the site. Sometimes the 'stoma' or hole (through which the tube passes) tries to heal over. This needs to be treated to stop skin regrowth. One person had to have the tube replaced repeatedly because it kept perishing, which is very unusual. (Different types of tube are used; some last longer than others). 

A few people had more problems with the procedure itself or with the care afterwards. Sometimes speech difficulties made problems worse because they made it hard to communicate with staff. (See also 'Speech and communication'). One woman said her mother found that lying flat made her want to choke, but staff caring for her seemed not to consider this. Another said staff treating her husband found it hard to insert the endoscope through which the PEG tube was to be passed, because his swallowing reflex was affected. However, other people with swallowing problems had no difficulty with this part of the procedure. 

Some people who relied completely on the PEG or RIG for feeding described how they tried to fit it round the family's normal meal-time routine. One man even had supplies of feed sent out in advance to Portugal so he could go on holiday without worrying about taking supplies with him. Another had found it quite easy to obtain a supply of vegetarian feed.

People are usually advised to put only the specially prepared feed through the tube, and not other forms of fluid, including liquidised food, in case the tube gets blocked or damaged. 

People can sometimes take medication through their tube, usually as a liquid from their pharmacist. Riluzole, for example, is now available in liquid form. Some medication in tablet form can be finely crushed and suspended in liquids for use with tube feeding - this should always be done in consultation with a health care professional in case it risks blocking the tube or disrupts the way the tablet is supposed to work. Some medications may be available as skin patches. (See 'Medication, trials and research').

The tube needs to be flushed daily, even if it is not being used for feeding yet. It also needs to be turned regularly. Some carers said that at first they found it daunting and frightening to have the responsibility of keeping the PEG functioning but they got used to it. One woman said at first it was, “Like an alien that's come in to live with you in a way. But it's so commonplace now.” Some said they came across other staff such as district nurses or hospice staff who needed more training in looking after people with a PEG. 

Some people found the tube sticking out under their clothes annoying or uncomfortable. One woman had made a little fabric pouch to cover the end of her husband's PEG tube so it wouldn't dig into his skin when lying down. Another was planning to get a different type of tube which sits flat against the skin.

Ventilation
Experiencing breathing difficulties and choking fits could be both very tiring and frightening. (See also 'Eating, swallowing and breathing'). 

Several people had managed well with non-invasive ventilation (NIV). NIV uses a small machine to support the person's own breathing, by providing extra air through a face mask or nasal tubes. Ventilation can also help support the diaphragm and make it easier for people to speak.

For carers, it can take some getting used to when their partner uses a ventilator. One woman said she had moved out of their shared bedroom at that point, “Because it's like someone hoovering all night to my mind - no thank you!” Another said she had now got used to the sound.

Most people we spoke to were comfortable with the idea of non-invasive ventilation, although not everyone will want to consider supported breathing. (See also 'Hospices, respite and thoughts about future care').

The option of full or invasive ventilation raises further issues. When invasive ventilation is used, the person's breathing is taken over altogether by a tube which is passed through a hole (tracheotomy or tracheostomy) directly into the person's windpipe (trachea). One man explained that he had discussed with his wife beforehand what interventions she would consider and where she would draw her 'line in the sand'. Having a PEG was already close to this line for her, but invasive ventilation would have been against her wishes. 

People's views about what care they wanted in future and the use of an Advance Decision to Refuse Treatment (ADRT) form (previously known as a Living Will) are explored further in 'Hospices, respite and thoughts about future care'.

Further information sources:

  • The MND Association produces information sheets to help, such as ’7A: Swallowing difficulties', 7B: Tube feeding' and a guide called Eating and drinking with motor neurone disease, with information and easy-swallow recipes. They have a range of Information sheets (8A-8E) on breathing and ventilation. Their resources can all be downloaded from their website. 
  • The MND Association also hosts an online forum where people affected by MND can share experiences.
  • The National Institute for Health and Clinical Excellence (NICE) has produced Motor neurone disease: assessment and management (NG42). Which includesa clinical guideline on the care and management of MND. The guideline includes recommendations for regular assessment of respiratory function for people with MND (including at or shortly after diagnosis and then every 2-3 months) and urgent referral to respiratory services if problems are identified.
  • The Build-UK discussion forum has a number of articles about ventilation.
  • The MND Association provides the ‘MND Just in Case Kit'. The kit consists of a small box supplied to a named individual through their GP. The GP should prescribe medication to fill the box that can be used to give immediate relief in the case of breathing difficulties, choking or related panic. Leaflets are included that give information and instructions for family carers and health professionals. Most people will never need to use the kit, but just having it readily available at home can help give reassurance and confidence.
     
Last reviewed August 2017.
​Last update August 2017.


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