What we would say to dietitians if we could
Listen to us and know that one size does not fit all
Be non-judgemental and problem solve with the patient
Remember that we need you badly
You have a lot of power in the hospital
When we understand you,
We appreciate you massively
Test us with food that doesn’t revolt us
No overripe bananas, please
We have nightmares about hospital purees
Some of us are happy to use Fortisip and Ensure
Free food!
Lots of us are revolted by them
Even when tube fed you can taste them in the back of your throat
We’d all prefer natural food
For one it was like eating a bag of lollies
Others struggle with “proving”
Proving they can drink six bottles a day
Our stomachs can play up
Diarrhea, nausea, heartburn
These can be worse with Fortisip
The first one isn’t funny
Hospital is hard for some of us patients
Nil by mouth in a room with eating patients
No meals or drinks to break up the day
Don’t lose weight, you say! We’ve never heard this before
Explain why we need to keep our weight up
See us before treatment
If we are light we might try to put on weight before treatment
But don’t lecture us too much about calories
We know you have to, but …
We are struggling with taste, texture and swallowing
Be aware of our culture – HNC doesn’t discriminate
We lose our natural hunger signals sometimes
Food becomes a duty
We have ulcers
Mouth and throat surgery or scarring from rads
Dry mouth is a horror show
Radiotherapy burns the lining of our mouth and throat
Anything in the mouth causes pain
Eye-watering pain
But don’t put us on a tube unless we really need it
After treatment our food can get stuck!
Coughing fits
Fear of inhaling
Can legal cannabis products increase appetite?
Tell the hospital not to give us sandwiches
Not when we are first admitted
Not if we can’t eat properly
TLC required in massive doses
Some of us are socially isolated
We can’t eat out
Food and drink are core to our social lives
But some of us can’t
Some of us are elderly and alone
The peg!
How to use it – and a day pack to carry it
We are lucky when a dietitian can help us with our tubes
Some of us can use real food
Real food to blend and put down our feeding tube
We appreciate this
But one size doesn’t fit all
Recipes for mince and moist
Recipes for one are hard to get
A big thank you to the dietitians
The dietitians who play a big part in getting us through
Encourage us to work with you
To problem solve with you
Job satisfaction for you
Happier and healthier patients