Nephrostomy Help

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Hello, new here and thanks for having me.

My grandad has advanced bladder cancer (currently outliving his terminal diagnosis). Every time I say goodbye to him I think it’s going to be the last time. 

He has a double nephrostomy but it constantly leaks and he is in significant discomfort. I’m pretty sure he is also depressed and does not have the energy to keep changing out of wet clothes. 

They’ve been leaking for 5 days now. District nurses can’t stop it and are taping absorbent sheets to his back. They’ve referred him back to to the hospital. Hospital won’t see him and have referred us to 111. 111 can’t believe he’s been treated like this. They called the hospital and then called us back to confirm that shockingly they have said we just have to wait. 

What are we supposed to do? Can this be fixed privately just to stop this, or does anyone in the NHS actually care? 
Thanks for listening. 

  • Hello Rackstrat, I agree with you the NHS appears to be turning its back on your Grandad, which surprises me. My heart goes out to you both. My advice is to ring your MP and ask them to intervene on your behalf. I hope you get an outcome soon. Garviv

  • Thank you for the suggestion - we will try. 

  • You might also try the media - newspapers or broadcast media. Start with the Guardian health correspondent 

  • Im sorry I’ve just seen your post you posted 4 months ago, I really hope your Grandads leaking Nephrostomies have been solved.

    I’m so sorry to hear your grandad is suffering & surprised that his hospital has not seen him.normally nephrostomies are exchanged every 3months, I’m sure your Doctor could intervene, which hospital does your Grandad attend? 

    My husband too has terminal bladder cancer & CKD has had bilateral nephrostomies for over 4years, these are exchanged every 3months in Guys/st Thomas’s hospital in their Interventional Radiography department, he has had a few problems in the past, tubes coming out, tubes becoming blocked,any problems IR dept always see him as an emergency. Really hope your Grandad IR department has seen him

    Your grandad very lucky to have such a caring & a supportive grandchild,

    Wishing you & your family love