Team categorically refuse to give my husband a PEG or NG tube during treatment

Fry7b5361 said:

. Where do we go from here ?

All you can do is see how he goes but keep PALS on the back burner. Ade may manage so don’t panic. 
Where is he being treated, by the way?

Bristol Royal Infirmary 

They keep going on and on about unilateral. After reading up on this myself side effects in the long term are better for unilateral patients but short term there is very little difference. No one is listening to our concerns. What is PALS ? 

Fry7b5361 said:

What is PALS

Patient Advice and Liaison Service. It’s the first stop for complaints. Contacting them often gets the ball rolling pretty quickly 

https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Fry7b5361 said:

After reading up on this myself side effects in the long term are better for unilateral patients but short term there is very little difference.

Yes you are right. There is better preservation of salivary function for a start which means that long term dental outcome is better too 

Acute effects are more or less the same. If one side of the throat is being fried the pain is the same in my experience of posters here. 
I think the only thing Ade can do is wing it day by day and if swallowing gets impossible to insist on an NG. They can’t refuse if he can’t take nutrition and pain relief. 

Hi Dani

They have said he cannot go home with an NG it's not policy for unilateral patients to have one. If he has one it'll be put in when he goes into hospital until they can resolve the problem causing him not to eat like pain or swallow. They would then  remove it before he leaves in 2 or 3 days. That's what the S&L told us yesterday. They will not send him home with one. So we are now very worried there won't be a feeding tube option available. They have said PEG would be fitted but only at a last last resort and they are confident he won't need one. Needless to say we definitely do NOT feel reassured by any of this. 

They have said he would need to be critical for a PEG. 

Fry7b5361 said:

S&L told us

The issue is the purview of the dietician not SLT. Have a word with his CNS to tackle them and his oncologist. 

Fry7b5361 said:

They have said he would need to be critical for a PEG. 

Yes that’s true because it’s an invasive procedure just when you are feeling awful

I just can’t understand this attitude. The better nourished and hydrated you are the easier the journey and the faster the recovery. 

It was the senior oncologist who rang him this morning to tell him he wouldn't be able to have an NG to go home with or a PEG unless it was critical. They all seem to be singing from the same song sheet on this  

And he has spoken to the CNS and they have said exactly the same as everyone else and said to Ade so what is it that you want us to do ? They won't support either.