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Tips on caring for people with learning disabilities - feeding tubes

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Nursingtimes.net is partnering with Netbuddy to help nurses care for people with learning disabilities. Here, we look at tips on feeding tubes.

Cleaning a gastro tube

If you are struggling to clean a gastro extension tube, especially if you use high calorie feeds or thickener, drag the closed clamp down the length of the tube. This helps to remove stubborn bits of feed that remain in the tube after flushing.

Soothing cream for leaks

If a leaking gastrostomy is burning the skin, then a burn cream like flamazine will really help and be soothing. It worked far better for us than any barrier cream and an anti-acid helped reduce the acidity of the leakage (be warned the GP may refuse the anti-acid due to price but it is worth the fight).

Sorbasan

If your gastrostomy leaks (my son’s pours!) then sorbasan is the most absorbent thing I have found. Basically it’s a seaweed dressing and there are lots of different versions and sizes.

Oral tasters

Consider oral tasters for some people who are fed by tube to try to maintain some swallow function.

Bolus aid

You can make your own bolus/kangaroo holder from a music stand with the top section removed and bolt on in its place a “terry clip” of the correct diameter to hold the bolus set. The music stand can be bought for under £10 including postage from ebay. It is collapsible and therefore portable.

Travel friendly bolus

My son is gastrostomy fed by bolus feeds every four hours. To ensure we are able to carry on with everyday life we feed him wherever we go. We try not to let it stop us but found that asking for hot water was a problem for some restaurants. We use a waterproof washbag and keep his bottle of feed, a flush, tubes and a baby bottle warming flask from Mothercare, heat up his milk wherever we are and do the feed. Voila!

Tangle free

You can make a sling to keep a central/Hickman line to sit around the neck. It prevents it from getting tangled up or pulled. We used bright coloured fabric, just a simple square pouch with a little velcro to shut and tape or soft cord for a necklace.

Cover ups

All in one surfsuits keep all the lines and tummy bits undercover when in the pool or on a beach.

Moisture for dry mouth

John breathes through his mouth and it gets very dry so I use lemon and glycerine mouth swabs that I get from www.henleysmed.com

Silk NG tubes get thumbs up

I am a paediatric nurse and we always use silk NG tubes rather than plastic as our policy is to change plastic ones weekly - they do start to disintegrate after this time.

Silk ones are much easier to pass than plastic as they have a guide wire inside which makes them stiffer. You then remove it when the tube is down. I reckon most children say to me silk ones are more comfortable and I really don’t think they are easier to pull out. Many hospitals are reluctant to use silk ones because of the cost but I would strongly recommend them.

Peg works

My daughter had an NG tube for a year. She now has a peg fitted and will be having the mickey button fitted soon.   We found the NG tube extremely difficult because she was pulling it out all the time. Now we have had the peg fitted it has made our lives hundred times better.

Infection-free gastronomy

For anyone who has a gastronomy/MicKey button, we have found that the double-sided make-up pads from Boots/Tesco prevent any infection to the site. We cut to the centre of the pad, put it round the MicKey button and put some micropore tape to hold it round the ‘button’. This lifts the button away from the skin and prevents sweating. Since we started this we have had no strep/staff infections. Change the pad once a day. Cheap and effective!

Top tips

Nursingtimes.net is partnering with Netbuddy to update nurses with the latest helpful tips on caring for people with learning disabilities. Over the coming months, we’ll be publishing tips on nursingtimes.net and encouraging you to share your own ideas on www.Netbuddy.org.uk.

Netbuddy

For more on learning disability nursing, see www.nursingtimes.net/nursing-practice/clinical-specialisms/learning-disability

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