Spina Bifida and kidney infections: anyone know a good specialist?

[Elibean]

My DN (adult) has mildish SB, and has had to self-catherize the past year or two. She's now having chronic, recurring, UTIs and kidney infections...really painful, and necessitating non-stop ABs.

She's not getting much help from her GP, and although she is due to see the SB clinic at Chelsea & West soon for her annual review, I just wondered if anyone had experience of this or knew of a good specialist she could ask to see either on NHS or privately??

I hate seeing her like this, its really affecting her life, morale, and relationships

bump?

Nothing of any value to add - just wanted to keep this active.

Hi,
Know this is an old thread but had to add my two cents worth. I have a similar problem to your daughter and i self catheterize most of the time but have a spc in at the moment. I see a great urologist at Pinderfields at Wakefield who specialises in neuro - urological problms. (i don't have SB, but i have a sacral nerve root injury so similar effects.)
I have constant uti's and am in an out of hospital for iv antibiotics.
Hope this helps,

Hi, I have no experience or advice to give, but wondered if it is worth contacting the Health Adviser at ASBAH (Association for Spina Bifida and Hydrocephalus - we have had many dealings with the charity as my dd1 has hydrocephalus). They have a helpline and might be able to offer some help and advice?