Register Latest Topics
 
 
 


Reply
  Author   Comment  
elspeth

Registered:
Posts: 1
Reply with quote  #1 
I am new to the forum - I have had UTI on and off for over a year now, NHS consultation that lasted three minutes and bladder stretching done privately.  After being prescribed a mixture of short term antibiotics over the last few months by  various GPs at my surgery I have now discovered BHUK, have read the research and found out that i have all the symptoms of a biofilm infection and that I am not alone .  I am considering making a private appointment with the Prof (ML) but cannot get one till August.  Do all the specialists treating this type of infection  use more or less the same methods.  Perhaps I might have less time to wait if I was to go to Mr A. in Leeds.  I have asked my GP if I could be referred to one of them on the NHS but things move very slowly up here (west coast of Scotland)  and  would probably take several years. 

Further questions
- I had hair loss with nitrafurintonin.  Is this normally the first antibiotic used.
- if you go to a private consultation can you get your antibiotics on the NHS ?

__________________
Lorna Tait
Moderatorsusan

Moderator
Registered:
Posts: 1,041
Reply with quote  #2 
Hi Lorna

Just to help with some information.  The Professor's NHS clinic has recently reopened to NHS patients and if you can get a secondary referral from your urologist to the clinic, they are currently booking patients from June onwards.  BHUK can provide you with further information including clinic codes etc for the referral letter.  They cannot accept GP referrals, all patients must be referred via a secondary route but this can be through a urologist, a uro gynae or any secondary consultant. BHUK have the latest research from the Professor's clinic  from this year and an outline of treatment methods that you can take to your appointment with your specialist for a referral.  Call them in the morning.

The professor is known for his prescription where necessary of long term high dosage antibiotics.  It is the dosage and persistence that is key as because through his clinical and scientific research he has noted the effects of low dose antibiotics on bacteria and how they are able to develop resistance to these dosages.

The remaining specialists will prescribe high dosage antibiotics but not necessarily for the length of time that the Professor will offer.  All patients regardless of whom they are seeing will need regular follow ups of around every 2-3 months to check on progress before further prescriptions can be issued.

Always remember that length of time to resolve symptoms is entirely individual and there can be ups and downs in treatment.  Its not a magic wand waved and everything disappears in a week especially with a long term infection.  

Mr A's wait list for an NHS referral is 6 months if you are looking at that route.  If going privately then you can be seen sooner.

In terms of antibiotics prescribed, this will be down to the individual specialist you see.  If you have side effects to previous antibiotics you must always explain these and alternatives will be prescribed. Additionally when in treatment and side effects occur, always contact your specialist immediately. All medications have side effects given they are a chemical compound and patient safety is of the utmost importance to all of these specialists.  These specialists don't rely on testing to treat you but also heavily work from your symptoms which are just as key.

With regard to private prescriptions on the NHS, they can be converted if you see your GP but some patients are finding that their prescriptions won't be converted either due to CCG prescribing restrictions or GPs preferring that patients are managed directly by the specialists given the dosage and length of treatment.

Call BHUK in the morning and they can give you more information about how to seek an NHS referral to the Professor or Mr A and good luck with your treatment and getting well.
Sophs50522

Registered:
Posts: 85
Reply with quote  #3 
I.am currently in middle of trying to get gp to convert my private prescription.. i had to fax my details to gp and they have faxed them over to a urologist at my local hospital and now i need to wait to see if they will approve it so the gp can convert them.
Bet they say no though due to the high dose and length of treatment.
Worth a try i guess! Managed to bags a weeks worth out of them though! (:
The prof prescribed me a diff antibiotic due to ear problems so if you tell him.about the side affects you had on that antibiotic he will trial a diff one for you.
Moderatorsusan

Moderator
Registered:
Posts: 1,041
Reply with quote  #4 
What a game. Surely the GP is happy to accept treatment letters from Prof given he is the provider of your treatment.. I assume your GP has the letters that the Professor has provided at each appointment?

If the urologist declines the prescription, I would write to your local CCG asking for the reasons in writing that your GP is unable to prescribe based on the Professor’s letters. I would also advise them that you would be writing to your local MP in light of treatment refusal and see what happens. I’m aware that other patients have taken this route and been successful. To help, you could include the following two documents. One is prepared by the Professor for all GPs and patients and the other is the latest 10 clinical research study he published in March of this year involving over 600 patients.

http://www.chronicutiinfo.com/wp-content/uploads/2017/06/The-Treatment-of-Lower-Urinary-Tract-Symptoms-Prof-JML-clinic-for-GPS-and-Patients.pdf

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

Given the Prof’s clinic is now open to NHS referrals from Secondary Consulants, you could ask your GP when he contacts the consultant to ask that a referral be provided to the NHS clinic by the consultant. BHUK have all the details you need including Clinic Referral codes, fax number and address for the clinic. That way you can be seen within NHS care and be provided with NHS prescriptions. My understanding is that patients are now being seen from June onwards once a referral from a seoondary consultant has been received by the clinic.
L8tti_x

Registered:
Posts: 33
Reply with quote  #5 
My gp supported my treatment for a year based on prof's correspondence.

After 12 months he withdrew his support because it was unlicensed...

Definitely worth a shot with your gp though.

I am in the process of trying to get referred to prof's NHS clinic; I saw 2 urologists in 2016 so I'm hoping one of them with refer me!

__________________
Lotti
Sophs50522

Registered:
Posts: 85
Reply with quote  #6 
Oh really! I guess 12 months is better than nothing so worth giving it a go. M gp said they dont prescribe hiprex though weirdly? He said it would just be the antibiotics i could only get prescribed! Its really cheap though isn't it?
How long did it take for you to be symptom free l8tti since starting treatment?
Im in agony today all around my torso front and back! [frown]
L8tti_x

Registered:
Posts: 33
Reply with quote  #7 
It took 13 months before I really noticed a difference; a long slog I know.

During that time it fluctuated constantly but that is the nature of this horrid disease. I had a painful day last week for no apparent reason and now I'm back to symptom free again.

So strange

__________________
Lotti
Sophs50522

Registered:
Posts: 85
Reply with quote  #8 
Oh wow, that is a long long time but worth the fight!
Hopefully it don't take that long for me.
Dreading the burning hiprex now!
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.


This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

BHUK is not a medical body & do not claim to have medical knowledge. It is not the intention of BHUK to provide specific medical advice, but to provide users with information to better understand their health & to manage their suffering.

Specific medical advice will not be provided & BHUK strongly advises that you consult your GP/Consultant/Urologist for professional advice.

We would hope that users of these forums will conduct themselves in a courteous and respectful manner. Any conduct not consistent with this standard will be deleted immediately and the poster may be restricted and/or terminated without warning.