Hi Diane,
Thank you so much for your post.
This is one thing I am livid about because a Mcmillan nurse is supposed to be referred to you by your GP and my mums didn't bother because she felt she didn't need one, as she had me and she thought she could cope without one! Who the hell is she to decide that?!
I tried to get some attendance allowance and asked Mcmillan to help with the forms, they weren't very helpful and my mum was refused! I wrote a letter of disgust and got my mum some AA on my own! I looked after my mum from start to finish, even injected her everyday in the stomach with blood thinners, no help from no one, I had no support, did it all on my own and Im ill myself.
I take it you are in the UK, where abouts are you? Apparantly, my mums gp has referred her back to her Urologist, who told my mum she doesn't empty her bag often enough and she gets backflow, what a load of rubbish!
I did think of getting my mum referred to a Urologist at University College Hospital in London, as they are a Mcmillan hospital and were just private patients, but now see nhs too.
I don't know what Mcmillan can do for my mum as shes post op, do you think they might know what the problem can be, or are they just there to support?
Thanks again for your message Diane.
best wishes sharon