Living with tube feeding or TPN (feeding to the heart via a central vein), has a significant impact on loved ones who care for and about them. Helping to look after not just the feeding or infusions themselves, but also to assist with the tubes, lines, stomas etc that are needed. Dealing with unexpected problems that inevitably occur and liaising with healthcare professionals. As well as managing the practicalities of delivery of feeds and equipment, stock orders, and storage. It’s a lot to navigate in any relationship. We asked a husband/carer of a person on Home Parenteral Nutrition and a parent of a baby on Home Enteral Nutrition to give us some insight into their perspectives…

Husband / Carer Perspective (HPN)

Working full-time, being a husband and carer for someone on Home Parenteral Nutrition (HPN) is something of a challenge. Things have to run well, if not something has to give. Will the Total Parenteral Nutrition (TPN) delivery allow me to fit in that visit to a client in the community that needs to be seen? Will the GP surgery have sent the correct prescription to the pharmacy this time or will I need to go back to the surgery, explain again to the receptionist that yes it is urgent and necessary? Will my manager understand that if there is an unplanned admission or medical emergency, I need to be there? How do I strike the balance between supporting my wife and supporting my team and how will I get time to see my good friend for a game of pool and a pint?

It is difficult to articulate the struggle to manage competing demands and priorities, but well that is what we do day in day out. If only the system would work a little more smoothly it would help a great deal.

Parent Perspective (HEN)

I am a Mum of a baby who has had to have an NG tube for feeding and medications. As a parent the hardest thing is seeing how distressed my daughter becomes when inserting the tube as she can gag and it irritates her throat. I’m also aware she does not get to taste her food. Before any liquid is put down the NG tube, I need to ensure the tube has not moved from her stomach. Aspirate from the stomach needs to be drawn up from through the tube and the PH tested to ensure the liquid is acidic, which confirms the end of the tube is in the stomach. It would be very dangerous to put liquid down the tube if it had moved, particularly if the tube had moved into the lungs. Sometimes it can be hard to obtain aspirate, perhaps because the tube is not far down enough in the stomach, the tube has moved out of the stomach or it is stuck to the stomach wall. It can be distressing when your baby is upset and hungry, and you can’t feed your baby as you’ve not yet obtained any aspirate.

It does get easier with time though, as you get more practised and confident in using the tube. I’ve had a very conflicted relationship with the tube; I am very grateful my baby can be fed and I know she’s getting enough milk. At the same time, I hate that she needs it, she doesn’t like it (so often tries to pull it out) and that other people might treat her differently for it.

Check out PINNT for further information on HPN/HEN