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

Fab1 said:

I do not understand why his medical team wants to wait to see whether his situation becomes critical. 

Maybe this is a matter of semantics........What is critical? I was never offered a PEG but was assured I would have an NG if I couldn't swallow my food or meds. Everything came crashing down on a Friday afternoon after I got home from my 21st RT and for the whole weekend I couldn't swallow Fortisips or pain relief. After RT on Monday the radiographers got me straight in.

What I find absurd is the lack reassurance that they won't let Ade suffer more than they can avoid. A simple nod to the fact that an NG (easier to fit than a PEG) would be offered would diffuse the situation no end.

Fry7b5361 said:

Now we have begun treatment we feel cheated because there is absolutely nothing we can do

Try not to stress about this and concentrate on getting through this. No matter what has been said if Ade can't swallow food or analgesia they won't abandon him. You just have to be firm if that happens and say he can't swallow no matter what drugs he gets and that's an end to it.

Morning Dani 

Ade gave me some more info regarding the conversation he had with the senior oncologist yesterday. She said it's not policy for you to go home with an NG because we are a small oncology and we don't do that. So I think it's more time, resources and funding rather than anything else. She also got a bit shirty because she said most people don't want to know everything like you do. So I think they rely on people being naive and therefore not even knowing a feeding tube is an option. I think we will be banging our heads against a wall if we try to speak to anyone regarding it because they are all taking the same stance

Fry7b5361 said:

She said it's not policy for you to go home with an NG because we are a small oncology and we don't do that. So I think it's more time, resources and funding rather than anything else.

Sounds like it, doesn't it. Remember what I said....They won't leave him in a situation where he can't finish treatment. If he has an NG as an in patient then at least it's something. 

I've never heard of small oncology. It's a general hospital isn't it? They must use NGs in other circumstances? 

Yes it's a huge hospital and she said they do it elsewhere in the hospital but that they don't do it on oncology. She said they don't train members of the community to use them at home ( so again funding, time and resource). It's such a shame that I fear everything could have been different if we were in a different postcode. 

I had my NG placed in hospital and I was admitted for three nights, but that was really because it all happened over a bank holiday. On discharge it took the dietician ten minutes to explain how to bolus feed with the syringe. It was the Nutricia (the company who supplied fortisips) who visited me at home and showed me how to manage the tube and pump. 

Hang on in there. Just stop fretting before you need to. You are prepared as well as you can be.

What about medication, though? My husband managed to take most of his feeds orally through radiotherapy and after, but he resorted to the PEG for medication as it would just have been too unpleasant to swallow that slowly and painfully. It was useful to have the PEG for when he was really tired, too, and as a result he kept his weight up through treatment meaning recovery was quicker. 

If the issue is that it is a small oncology unit, then surely they can refer elsewhere for PEG fitting? 

I am sure they will sort him out if he needs it - the NHS does seem to come through on the big things - but I find it a surprising attitude. Are there any Macmillan nurses there, and what do they say? 

Fry - I’m shocked with this stance. Obviously don’t know the full circumstance of what you’re going through but my understanding and personal feeling (for what it’s worth) is that having a PEG or RIG fitted before treatment is so much ‘easier’ or sensible than during treatment or afterwards. Reading that he’d have to be ‘critical’ seems bizarre too.

I think the concern around any head/neck treatment are the unknowns and ‘what ifs’. I had a PEG fitted before my treatment and was hit for six after my treatment and was unable to sip water because my neck, throat and mouth was so sore and inflamed (especially owing to the radiotherapy). Unfortunately, I was pretty unwell and can 100% guarantee that I would not have been able to endure having a PEG fitted post-treatment. To add balance to my observations, I think I was particularly unlucky.

My feeling would be to go with your gut and if you’re feeling really anxious, unsure and worried to ask some uncomfortable questions. My ally was the Community Dieticians Team, they obviously work closely with clinical teams and they ‘might’ carry some weight speaking with your consultants etc. The phrase goes - ‘better to have had one and not needed it than needed one and not have it’.

Regarding an NG, my Oesophagus was torn during a dilitation (throat stretch) operation four years after treatment. They fitted an NG in the operating theatre. I stayed in hospital for 2 weeks recovering and was due to go on holiday in week three. I told them that I was going on holiday and that I was leaving with my NG fitted until they were able to schedule a RIG being put in.

It’s not normally done but you can leave hospital and use an NG at home to feed yourself. They worry about you over feeding and risking aspirating food from your stomach into your lungs (which is clearly bad). There is an also a risk of the NG dislodging from being in your stomach and relocating into your lungs. Clearly, an NG tube internally is suitably long and doesn’t sit close to the branch where one way is to the stomach and the other is to your lungs! Risks are risks and I think quite rightly that clinical teams will always err on the side of caution.

Hi 

Yes CNS nurse said exactly the same. 5 members of the team CNS, SLT, oncologist, senior oncologist, radiographer each individually said the same thing  ! It's upsetting that we have barely started treatment and we are losing trust in our team. 

Ok thank you.

Maybe we need to contact the Dietician then. I'll give that a try. I'll try anything at this stage