Panicking and refusing to eat and drink after dysphagia diagnosis

A little lost4db36a said:

I rang 111 yesterday and the doctor said medically he seems okay but psychologically he needs help and holistic care.  They are going to write to his GP. 

Did anybody actually see him?

I suspect not otherwise they wouldn’t have referred your husband back to the Gp. 

phone your husbands CNs to get an appointment back with his team. 

Would you share what his SLT said? 

Many hospitals have a clinical psychologist attached to the cancer teams - covering all cancers.  When you speak to ENT see if they have one at your hospital and if so ask for an urgent referral.  Otherwise camp out on the GP's doorstep and get an urgent referral through them to the local mental health trust.

I’m really pleased that Dani and Peter have responded. They know so much more about how things work than I ever would.  I started to pen a reply last night….your experience saddened me greatly and I was so angry on your behalf that you have been put in this position…but realised that I had little to offer by way of solutions, so hesitated.  I really do feel for you.  All this is in many ways so much harder for those who support us than for those who are actually undergoing the treatment.  I know it was for my husband. He went through the wringer.

I cannot imagine that anyone actually intended to affect your husband in this way - particularly as, as you say, and as confirmed by ENT, he’d been doing so well and managing soft foods successfully….but I do wish that sometimes some of the professionals who deal with this sort of thing on a daily basis would take just a few moments to think about the effect that some of the words they use have on their patients and their families who are more than likely dealing with life changing issues for the first time and are overwhelmed and frightened by what is happening to them.   It’s not rocket science.  I had a similar issue with one department I was seen by before commencing radiotherapy.  A few careless words….by someone who wasn’t really qualified to say… and who turned out to be wrong in what she said…were absolutely devastating….and, as in your case, it was my other half who had to pick up the pieces.  I dealt with it in the Wordsworthian emotion recollected in tranquillity when I’d settled down, by relating the incident and the effect it had had on me calmly and in detail  to PALS, not as a complaint, but as an opportunity for improvement….which I know was flagged up to the department concerned.  It didn’t help me, but hopefully it will stop someone else going through the same trauma…from that direction anyway.

None of this helps you of course.  I really hope that your husband’s team can get this turned around and that your husband’s progress can continue moving forward..and that things get easier for you.

Liz

Thank you all.  I rang the SLT team today, left a message and still no response.   I did however manage to get my husband an appointment with a GP today and she was wonderful.   She has really put his mind at rest (and he has responded to her, better than any positive things I could say) she did hos obs too which were all great and she's given him a very short course of diazapam just to get him out of this vicious cycle of panic he's in.  Already I can see a change in him just from having a supportive and informed conversation. 

Thank heavens you have an understanding GP. Not all of us can stand up to the unknown and a careless word can have dire consequences. And thank you Liz111 

for such a lovely well thought out response. 

Thank goodness.  You must be so relieved..

Liz