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Sophs50522

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Posts: 92
Reply with quote  #1 
Hi guys, my gp emailed a urologist working in for nhs about having my private prescription turned into nhs prescription and the response i received was utterly rude.
They said my diagnosis letter from Prof apparently was clever worded and is no evidence of a chronic uti and i am most likely suffering symptomatic uti and that his method is poor compared to the health boards highly sensitive testing.
And the antibiotics are just giving a placebo effect and he can take full responsibility for the suggested management.

It was just a really rude letter and wanted to share.
This is why i don't trust the nhs at all.
Sophs x
KJW

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Posts: 23
Reply with quote  #2 
Can you point him in the direction of the ten year study and research?  Can your GP find a different urologist?  Sorry that you had to experience that. [mad]
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Kirsty 
Jude10

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Posts: 50
Reply with quote  #3 
Hi Sophs have you joined the Facebook group? There,s lots of support and this response isn,t unusual!
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Moderatorsusan

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Posts: 1,086
Reply with quote  #4 
Oh dear, another day, another dinosaur of a urologist.  I assume he still thinks the bladder is sterile 😉. He may be interested to know that at the British Association of Urologists and Surgeons conference this year the UTI presentation was one of the most keenly attended. Seems like they have a lot to learn

Are you aware that the Professor's clinic is now open to NHS patients.  You need a referral from a urologist or urogynaecologist in NHS practice but if you are a private patient BHUK have a letter you can use to explain to your specialist why you are seeking this referral.  Call them in the morning and they can provide it to you. I'm sure your GP can help you find one that is at least happy to refer you, especially if you have already been through all the standard secondary tests. At least this way your prescriptions will be available as NHS ones saving you money and hassle.  There is an excellent pharmacy in the same building as the Professor's NHS clinic and they stock all his medications so you have a one stop shop so to speak.  And you can park for free at the building.

Prof is used to GPs asking that antibiotic management be maintained from his clinic so this is not unusual.

As for the comment about superior testing, really, when its missing over 50% of infections and hasn't been revised for over 60 years.  If its so foolproof why are BHUK pressing for changes in the collection and testing of samples because the stats are so awful.

Perhaps your GP could send this urologist these papers for a little light reading (and education).

I'd also send the Professor the response you have received.  He, I'm sure, would be happy to correspond with your GP and the urologist.  Quite what a symptomatic UTI is is anyone's guess but given the NICE guidelines are only available for acute infections, I'd honestly put this down to another example of the issues that patients are having to deal with when trying to resolve recurrent and chronic UTI.

https://link.springer.com/article/10.1007/s00192-018-3569-7

https://academic.oup.com/ndt/article/14/11/2746/1807919

http://theconversation.com/how-poor-nhs-testing-and-antibiotic-use-is-creating-super-strength-cystitis-63353

http://jcm.asm.org/content/54/5/1216.full

https://medicalxpress.com/news/2017-06-urinary-tract-infections-bacteria-standard.html
Sophs50522

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Posts: 92
Reply with quote  #5 
i just couldn't believe the response, i didn't expect to get my medication funded by nhs but the prof suggested that i try so i did but did not think they would reply in such an offended manner. They even wrote to the microbiolgy team. I can't quite believe that they just told me that it's basically a symptomatic uti and that it's all in my head!!
It made me so angry. I have no faith in the nhs system at all after reading that. I got referred for nhs urology 6 months ago and still haven't received an appointment. Absolutely useless.
I am aware of the facebook group, just need to contact the office about the details. Are you on there jude?
Thanks susan, it do seem like they are still living like the flintstones don't they! Ive researched the prof over and over and if it was all a load of rubbish like the nhs are indicating he wouldn't be where he is today with 1000s of patients behind him.
I just had to share with you all and let out some steam! I will most certainly be showing the prof that letter.
Jude10

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Posts: 50
Reply with quote  #6 
Hi Sophs, hope you are ok today after the rude letter! I am on Facebook group I used a different surname though for extra privacy. They have lots of letters you can give to your gp and other helpful info. Also lots of the other people have similar problems and prof also posts up if there is an issue affecting a lot of people. It can also pull you down sometimes to realise it,s not easy going through this but there,s also success stories and they give you courage !
Sophs50522

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Posts: 92
Reply with quote  #7 
Thanks Jude i will definitely be looking into it. x
Jude10

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Posts: 50
Reply with quote  #8 
Re the Facebook group People are really helpful and it,s good to help anyone having a bad time, there,s lots of info about dealing with thrush, I,m ok just now but someone recommended bathing in green enzyme liquid diluted she found that controlled it also boric acid pessaries are good. There,s also usually someone with spare hiprex, I got a supply from boots last week so it is around. I don,t take it as it was too harsh so I.m just on antibiotics as are many people especially to start with. I,ll try it later and see if it gets easier to take.
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