PEG feeding tube - can anyone advise me urgently please

[Whoknew76]

DH was fitted with a PEG feeding tube today as he has been diagnosed and being treated for head and neck cancer. He has his procedure done at a private hospital as our local hospital has a long back log and couldn't fit for weeks . All fitted fine but we have been discharged and the dietician isn’t here today to advise us. I’m worried as I have no training and none available over weekend. I think I need to flush with sterile water but I’m not sure when etc. Apart from videos any suggestions where I can get advice please.

Call 111 and ask them for advice. Hopefully they can put you in touch with the district nursing team.

There must be some follow up with the private hospital?

Phone 111 and ask them to direct you to the most appropriate place for advice.
Did the hospital just discharge him with no aftercare whatsoever?

It's relatively straightforward, but I wouldn't accept discharge until you have been shown, several times if necessary and been able to practice on a non inserted tube
Very best of luck

Definitely flush before and after feed, they should have given you a plan from the dietitian saying how much liquid, how many ml flush 🤔

I'd agree with 111. Alternatively, have you been given a number for Oncology Triage? Try that if so.

I doubt you are actually using food with it yet, but yes you will need to be flushing it.

You need to get back in touch with the hospital he had the procedure. He should not have been discharged without you knowing how to use the tube.

Agreed!

For a private procedure you need to call the hospital that did it. They will be able to contact the surgeon or team to answer your queries.

When DD had a private op the NHS would not treat her unless an emergency and we had to go back to the private hospital. Not a PEG but e rang both Friday night when she had a bleed through her bandages and again on the Saturday. Both times the team were fantastic and we had a follow up appointment booked for the Monday.

He should have an oncology number to call with any queries. Do you have hospice care? I found with my DP that the hospice were quickest to respond to queries, and always answered quickly. Does he have a district nurse coming out? They would be able to help and you can ask for an extra visit ASAP to help this evening. As others have said he shouldn't have been discharged if you don't know how to use it properly.

This is a terrible discharge if they haven't given you follow up information/support/training!

in my area the nutricia nurses come out to support with this, dont know if this will help, defo go back to the hospital or 111

https://www.nutriciahomeward.co.uk/contact-us

It is shocking that you have been discharged without any information and training around this. Is your dp able to have fluids by mouth?

You do need to flush the tube after feed as others have mentioned and should have been discharged with a plan. I would ring the hospital for advice or look for the number for your local community nursing team online - they may be involved or know who to contact.

I agree with other replies that say this was a poor discharge by the hospital and they really should have given some training then observed you providing care of the PEG to your husband - whether that’s how to care for the insertion site including cleaning and using any products required to aide healing or flushing the tube/administering meds or food through it.

If you get nowhere with the hospital (given it’s Friday evening there may not be anyone available to talk to) then I’d contact the oncology team/whoever arranged the insertion. If that’s not possible then I’d call 111.

I have been exactly where you are (same cancer for my DH ) and it is very frightening to be confronted with a PEG you have not had a seconds training in. Unfortunately it happens. Did they send him out with any kit?

It will be OK, but you do need to contact the oncology department, I know it is private but if that fails (as it's Friday evening) 111 and try to find the emergency number for your District Nursing service, don't take no for an answer.

It seems facile, but for you.

this is absolutely for the private hospital to sort out - they shouldn't be inserting PEGs and packing off home without training in the aftercare.

Sometimes when you google the brand of the PEG tube you can find the leaflet online and it has some basic info.

Is he using it for feeding straightaway or for now he is still managing to eat?

Can you call the ward tomorrow and ask one of the nurses? Just for the basics until you get a visit from the community nurses (Abbot or Nutricia nurses will usually visit the patients in the community to teach/troubleshoot)

https://www.rwt.nhs.uk/PIL/MI_9809514_04.05.22_V_1_pilot.pdf

PEG aftercare booklet from the Royal Wolverhampton Hospital

Thinking about this @Whoknew76 as he's being treated by presumably the NHS for his CA, a call to them might also be an idea, also the Macmillan nurses. I still think the District Nursing service is the best first option and there will be a call centre/out of hours number. 111 will also be able to refer to them urgently.

Please, please don't put pressure on yourself to attempt this until you have guidance. Can he still tolerate food/liquid by mouth?

Hi OP, my son has a PEG-J and previously had an NG and NJ tube. If your husband has previously had any nasal tubes, the care is similar but you should definitely be shown how to use it before discharge. Do you have a community nursing team? You may need their assistance as after two weeks you might need to do an advance and rotate (if gastric only) so will need some ongoing advice and care.

You need to flush before and after feed. We use cooled, boiled water as he is jejunally fed but if you have a straightforward PEG you may be able to use normal water. Every day we have to gently clean and dry the site with sterile gauze and cooled, boiled water only for the first two weeks and he couldn’t bath until two weeks was up but it may depend on the device you have.

If you DM me your email address I’m happy to photograph and send over the leaflets we received from GOSH upon discharge if that would help? Or they may even be online, I’ll have a look.

Was he referred by the NHS and had the procedure at the private hospital, or did you pay to go there? If it was an NHS referral then the NHS is responsible.

You shouldn't be in this situation. It's appalling.