Letter to the IMMDS Review Team about crisis in UTI (urinary tract infections) management for mesh injured patients.

Dear Baroness Cumberledge and the rest of the review team,

I’m writing to highlight some recent developments in awareness of chronic UTI and antibiotic resistance as featured in The Guardian a few weeks ago
As you may remember, I had my first visit with Professor James Malone Lee prior to our meeting last June. I’m still in treatment for my chronic infections, but have noted significant improvements in the severity of symptoms and pelvic pain levels. I still suffer from recurrent infections every month, but the long term treatment is certainly moving things in the right direction. I haven’t suffered from superbug infections at all this year and haven’t needed to be admitted to hospital for IV antibiotics at all since being on Professor Malone’s treatment regime. This is a significant development.
Following the article in The Guardian, numerous chronic UTI patients have been in touch with BAUS about this issue. BAUS have released the following statement in response to patients. (See attached file).
As you are aware, recurrent and chronic UTIs is a noted and prevalent complication of vaginal mesh implants. Many patients are struggling to access antibiotic treatment for infections due to the inadequate testing currently used to diagnose UTIs. The majority who are treated, are given short courses of antibiotics that don’t fully clear the bacteria hiding in the bladder cells, resulting in recurrent chronic infections. It’s one of the most frequently discussed problems on our mesh support groups. Many of these women are not being listened to by GPs and specialists who seemingly remain in the dark about how inadequate current testing is.
These women are sent away without treatment because the current dip stick and lab tests fail to identify their infections, despite presenting with significant symptoms of UTI. As you might imagine, these women end up in A&E with pain, fevers, bladder retention and kidney pain. In some cases they develop urosepsis because the original infections were missed. This is a serious health risk.
BAUS agree and acknowledge in their statement that current testing may be inadequate and that alternative testing and treatment regimes need to be investigated. It is noted that Mr Chris Harding and Mr Ased Ali are working in conjunction with Professor Malone to develop this research. I am also aware that Mr Chris Harding has been involved in a separate study on the use of Hiprex to treat chronic infections. I believe this study will be published in 2020.
This is an emerging field of research with a need for more published studies before a culture change in the diagnosis and treatment of UTIs can be realised. Nonetheless, it is an important area for consideration when looking at mesh complications and development of a standard of care for mesh injured patients. The current system of testing and treatment is failing mesh injured women. It is a significant complication that needs to be addressed by the medical community and the review itself.
Women going for mesh removal surgeries and repair surgeries after mesh removal, are at significant risk if the pre-op assessment fails to identify the presence of a UTI. I believe this was the case for me in 2015 when I was admitted for burch colposuspension surgery. The UTI test came back clear before I was admitted for surgery. Less than 24 hours after surgery I was in ICU with two collapsed lungs, unresponsive to antibiotics. I almost lost my life because of it. 
I hope you find this a useful addition to your evidence for the review. If you would like to discuss any of this further, please get in touch. 
Kind regards 
Cat Lee. 

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