PEG feeding at home: what the family does, what the nurse does, and what a carer can be trained for

A PEG is a percutaneous endoscopic gastrostomy: a soft tube that passes through the wall of the tummy into the stomach, placed using a camera passed down the throat. A RIG (radiologically inserted gastrostomy) and a PIGG do the same job but are placed using X-ray guidance, and a RIG is usually held in by a small balloon of water rather than a disc, as North Bristol NHS Trust's leaflet explains. A nasogastric tube is different: it goes in through the nose and down into the stomach, and it is used for shorter periods. If your relative has a tube in their nose, most of this page still applies, but the checks before each feed are different, and the team who placed it will teach them.

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A tube is offered when somebody cannot swallow safely, or cannot take enough food and drink by mouth to keep their weight up. North Tees and Hartlepool NHS Foundation Trust lists impaired swallowing after a stroke, motor neurone disease, Parkinson's disease or a head injury, and a partial blockage of the throat from head or neck cancer, among the reasons. NICE guidance says a gastrostomy should be considered when somebody is likely to need tube feeding for four weeks or more, and that after a stroke people who cannot swallow safely should first have a trial of two to four weeks of feeding by nasogastric tube (NICE CG32).

Each condition brings its own questions. After a stroke, the speech and language therapist may move your relative back towards food by mouth over time, and dysphagia diets after a stroke explains the textures they may use along the way. With motor neurone disease the timing of the tube matters, and MND care at home covers when that decision is made. Swallowing in Parkinson's has its own page, swallowing and speech in Parkinson's, and caring for somebody through cancer treatment is covered in cancer care at home. If your relative has advanced dementia, whether to use a tube at all is a separate and difficult decision, and eating and swallowing in later dementia is the page for that.

The dietitian at the hospital usually starts it. They decide what feed your relative needs, how much and at what times, tell the GP, and with your relative's agreement register them with a feed company's home delivery service. According to the North Tees PEG discharge advice, your relative leaves hospital with a week's supply of feed, syringes and equipment, and a pump if the dietitian advises one. After that, repeat prescriptions come from the GP. The same leaflet says to keep at least seven days of feed in the house at all times.

The feed company named in the discharge pack delivers the feed and equipment. Its nurses can visit at home, the North Tees leaflet says, and Cambridge University Hospitals notes that the company has a nurse helpline. The district nurse can be reached through the GP surgery, or through NHS 111 out of hours. NICE CG32 says your relative and their carers should leave with training on the tube and pump, a written care plan, and both routine and emergency numbers for somebody who understands tube feeding at home.

The teaching for the site, the flush and the turning comes from the nutrition nurse or the feed company's nurse, and they will tell you whether your relative's tube is one that should be turned. Kent Community Health's PEG leaflet explains why it matters: if a PEG cannot be turned or pushed in when it should move, the advice is to stop using it and ring the feed company nurse, the GP or the nutrition team, because it can mean the inner disc is becoming buried in the stomach wall.

Mouth care is easy to forget when nobody is eating, and it matters more for somebody whose swallowing is weak, because anything in the mouth can find its way into the chest.

The advice in the first row comes from Kent Community Health's leaflet on a gastrostomy tube that comes out and the North Tees discharge advice, which says the opening starts to close within two hours. Some balloon tubes are replaced at home by the nutrition or feed company nurse, and Kent's leaflet says to go to hospital straight away if a PEG comes out. The signs of feed going into the chest are listed in Kent Community Health's leaflet on positioning, and the signs that need 999 are those nhs.uk gives for pneumonia. If you are unsure which of these you are looking at, NHS 111 will tell you where to go.

How a task is handed to a carer is set out in delegated healthcare tasks: only a registered professional, usually the district nurse or the nutrition nurse, can hand the task over, after assessing your relative and then training and watching the carer. The sign-off is for one named carer and one named person, so it does not pass to another carer, and it does not come from the family, however long you have been doing the feeds yourself. Ask the nurse early whether they will train a carer who works directly for your relative, because some teams decline and it is better to know before you book anybody. Where the tube is one part of a larger package, nurse-led or carer-led complex care sets out which kind fits.

A carer can send a substitute under the client contract, and a substitute will not hold the sign-off. The contract lets you object where a substitute cannot meet the agreed care needs, so agree with the carer and the nurse beforehand what happens to the feeds on a day the signed-off carer cannot come.

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When you are ready, search for carers near you and compare their rates, and ask each one whether they have helped with tube feeding before and whether they would be willing to be trained and signed off by your relative's nurse. A carer's experience is their own account on their profile. PrimeCarers checks each carer's identity, their right to work and an enhanced DBS issued within the last 18 months, and interviews them online. We do not check training, qualifications or nursing skills, so the nurse's assessment is what decides whether a carer can give the feeds. Visits booked through PrimeCarers are insured while the carer works, and private carer insurance explains what that covers; ask whether that cover includes a delegated healthcare task. PrimeCarers does not introduce nurses, and can you get live-in nurses? explains where nursing at home comes from.