Chronic Pelvic Pain Clinic UK Shut

[Jas123]

Urinary Clinic Hornsey UK (under Whittington Health Trust) shut down by Richard Jennings Head of the Trust without any prior consultation with patients attending for chronic pelvic pain. Long term treatment by antibiotics from Professor Malone Lee who ran this clinic stopped 'out of the blue'. Has anyone else been affected? This was the first treatment that worked for me. Richard Jennings has also written to all GPs and Clinical Commissioning Groups to stop them continuing with the treatment regime. Why so heavy handed? No explanation other than possible side effects. Everything I take has side effects and the decision to proceed is undertaken with my doctor and not by an administrator. Any ideas where I can go to finish my treatment home or abroad? Urgent as you can imagine.

[Hidden]

Why don't you contact the health care commission in your area to inform them of the interruption of your care and ask if they can suggest an alternative. At the moment there seems to be the opinion that we should not be taking anti-biotics as a lot of bactaria are adapting and are not resistant to present anti-biotics. So until new antibiotics are available that seems to be the message to doctors and dentists.

[Jas123]

I think you are confusing two issues. GPs' overprescription of antibiotics is a different matter altogether. Hospitals have always ring fenced specific drugs and regimes for their explicit use, mostly because of the significant side effects that accompanied them, which required careful monitoring by a specialist team.

This was a clinic specifically run for a relatively small group of patients in severe and constant pain who had failed to respond to any other treatment. I have been seen and treated by 5 different specialists before I arrived at this clinic.

What then is the issue here? Not one of science as no evidence was given. By creating a spurious link to GPs prescribing antibiotics is just a feeble attempt to shut down argument.

If then it was for my well being why was I not involved in the decision making process, as per the government's mantra “no decision about me, without me”. My voice was silenced and my views rode over. Just think how any patient would feel to receive an e mail telling them that their life giving treatment was to be terminated without consultation, and to return to a general practitioner for further help? You would be just as scared as I am now watching my tablets dwindle and set to run out in a week.

I can understand we have to cut costs, but given time I could have used my connections to try and create a charitable trust to ensure the continuance of the research and the treatment emanating from this centre of excellence. As it is, if my pain flares up I will be left once again deciding if enough is enough.

[Hidden in reply to Jas123]

Sorry to hear about your bother. I understand, from my own experiences, why you're trying hard to avoid the position of having to decide again if "enough is enough".

My only suggestion would be to try and see the Professor or one of his team privately, as they would not be bound by NHS guidelines then. Of course this depends on whether that is financially viable for you.

Wishing you the best.