Gave up on getting my GPs to agree to get advice re further treatment since tests at St Barts etc. Rang around and got called back by Prof Aziz's secretary a couple of days ago. She was very kind although she couldn't really help and i thought the following info would be useful (as i haven't seen it elsewhere on here- Mods please correct if I'm wrong!).
In summary: the system has changed (possibly due to sheer number of patients?) and so the team there can no longer take referrals from GPs for and further management of problems/treatment, only for initial advice.
I will need to get a referral to a local gastro enterologist, who Prof Aziz can write to and advise re my treatment (presume this local doc has to write to him first though!).
I hope this saves anyone else the months of asking and head scratching i've had!
It is rather frustrating as I have been trying to get my GP to prescribe antibiotics for my repeat cycle of the initial treatment since January and they won't give them to me "For no reason" (I don't think they understand the treatment, I've been so bad in the past I asked for those specific antibiotics to treat the kidney and UTIs which I get as a direct result of the dodgy tum, but I want them to "get" this
). I just want to know how often it is ok, or even usual to repeat it. They keep refusing to refer me for anything without a massive fight- so I've booked an appointment and just need to cross everything as I'm getting worse by the week.