NJ issues

Hello ChitChat 

I am Brian, one of the Community Champions here on the online Community. I have just noticed your post has gone unanswered, I can't answer it myself as I have a different cancer, but by me replying it will be "bumped up" to the top of the page and I hope seen and replied to by other members of the group.

I can understand your frustration here with the system as you have been told to go to A & E. I think I would be putting in a formal complaint in the hope that something can be done to improve the "out of hours service".

As this post is now 3 days old, I hope the situation has now been fully resolved.

Best wishes - Brian.

Thankyou -after I put the message on here. I did put in a complaint to PALS and they replied straight away and the ward manager to see us the next day whilst we were sat in ED again. There was lots of failings which are hopefully being addressed. I was wondering if anyone else had a different pathway at different hospitals like open access to a gastric team 

Sorry to hear you and your husband are having such a rotten time. ! Treatment does seem to be a lottery my treatment was very straightforward and could not fault it so I guess I was very lucky !  What part of the county are you ? 

I’m glad your treatment went well - it’s so positive to hear.  We are Lancashire. The ward was great and the oncology have been great. It’s the NJ tube process that has caused all the trouble . I work for the NHS but in a different hospital and I expected some hitches but there  is no process in place for problems with the NJ apart from sitting in ED for hours on end . 

I had a jej feeding tube could they not consider that as it’s much easier ?!

The hopeful plan is that the chemp  will shrink the tumour and open up the oesophagus so that he can eat and drink again and get rid of the NJ. If it doesn’t they will put in a stent 

it doesn’t help that he can’t have a bridle to secure the NJ because his nose was broken that many times in his youth the rods won’t go up 

We are only 7 week post diagnosis so it’s very early and just getting our heads around it all. I will keep a JEJ in my head and ask about that if needed. Thank you 

I was able to eat after my second round of chemo so I have my fingers crossed for you ! X

Im so frustrated for you to be reading this, as this is also almost exactly what my dad has been experiencing with his NJ tube. He was told to wait in an and e to be admitted for it to be fitted initially. This took three separate overnight waits in the a and e waiting room, including being put on a hydration drip as he was so dehydrated. 10 days in total at one point without any nutrition. It was unbearable for us, (we aren’t local) and so so impossible for him. Apparently no other route for this to happen. 

The tube has become blocked a few times and each time there has been a different response pathway to getting it sorted out. It seems to largely be reliant on the good will of clinicians going out of their way to help for any progress to be made. Without this- the advise reverts to ‘wait in an and e’ and he is refusing to do this now. 

So so hard and confusing! 

It’s so difficult! A process should be in place as it’s not uncommon for these type of tubes to become blocked