Don't apologise Neurochic - that is one of the most useful posts I've read for being a CRPS patient in the UK. The system is complex and does, as you say, completely fail anyone who fails to improve with the initial physio and then stays 'improved'. If you are rare (sadly, I'm not sure we are really that rare) and have spread, worsening pain and symptoms, and start needing more complex care, the UK NHS really doesn't know what to do with you. So you get sidelined and 'managed'....

Some consultants are better than others, and if you find a (hopefully) better one, you can go to see them privately for an opinion and then get them to write that opinion for your file. You can then ask them to treat you through the NHS system, but they don't have to - so it depends on them entirely.

There might be other consultants within your local NHS trust who might be a better fit for you, but equally they might not. My first pain doc was not good for me at all, and a good physio I saw who really did know CRPS (and had a chronic condition herself) recommended a different one who is much better. Quite often your GP will just send you to the one he either has more experience with, or is at the top of the page he brings up on his computer

The sad truth is that being proactive is a great thing, but it can only get you so far, then the rest is up to the doctors themselves, and if they don't want to play ball they don't have to, because the system of NHS trusts actually encourages them to take the easiest, least complex, cheapest treatment route going.....it takes a lot for them to think outside the box for one patient.

Good luck. Don't blame yourself if you have fought as hard as you reasonably can and they still won't listen. If you are able to, consider going private to someone in England with a good reputation, just to get their opinion. About £150 max I think. Not cheap.

I completely agree about Bath. I've not been there myself - I was threatened with it, but did a lot of reading and realised that it really is just management - not treatment. It's physio, hydro and psychiatric groups. I'm not saying they aren't useful, but when you get to the state where your consultant will consider spending that kind of cash on your behalf to try and get you to be less demanding on the system I think those things are only partially helpful. I could have done with it when I was first diagnosed, not 2 years in... At more advanced stages, you want a more in-depth treatment, or real pain management that stops some of the pain. Hollow laugh.

Thanks Neurochic.

Bram.