I am in Scotland and have had CRPS for many years.

I don't do emotional so I am just going to post factual information about what goes on in the UK for you to use as you see fit. I have seen a lot of doctors in various fields all over the UK in relation to my CRPS and I will share the experience that I have had. It is also the experience that other people I have spoken to with the condition have had here in Scotland and the UK. I went outside the UK to see a true expert and the difference was incredible. We are probably at least 15 years behind some other countries in terms of our knowledge and treatment. There are other places where the treatment is truly cutting edge - globally, the Netherlands is currently where the forefront of the knowledge and research is concentrated.

I think one thing that is different for the US based posters here it that they can shop around until they find a doctor they are happy with and can go to multiple medical disciplines as they wish. That is not how the NHS system works. For our US friends, in Scotland, you have to convince your GP to make a referral for you to a specialist and they will typically only do this one specialty at a time. They hold the budget and the decision about what is needed, not the patient or an insurer. There are also lots of rules and guidelines that have to follow in referring a patient. You can seek a second opinion if you are unhappy but this is not an easy or rapid process. It also risks having you labelled in your medical file as having a psychological problem of being a hypochondriac. I'm not making a judgement -just saying this is the harsh reality. Private medical policies in the UK don't cover chronic conditions like CRPS after the acute stages so if you want to seek private medical care you will have to pay as you go. There is nobody working privately in Scotland worth going to see either for your issue. They will be nicer to you and you will get a more sympathetic ear because you are paying, but they can't influence what the NHS then do when you have to undergo the ultimate procedure.

You will not find a true CRPS expert in Scotland in any field of medicine. You will find several consultants who will tell you they know about it or have treated it but there are no experts. This is the same whether you go via the NHS or privately. There are a few in England who have a decent level of expertise but for real experts you need to go outside the UK. That is what I ended up doing a few years ago. There are no true experts at the so-called UK Centre of Excellence in Bath either - I've been referred and assessed there too. They have repeatedly lost the more experienced consultants they had (and that level of experience is all relative). The focus there is pain management rather than any of the other aspects of wider CRPS care. They typically will advise not having any invasive procedures unless it is an emergency but don't have detailed protocols to provide and, anyway, wouldn't be able to give any specific advice unless you were their patient.

In Scotland, there is no database of NHS consultants which GPs or the public can access to try and find someone with suitable skills and experience. This is different in England where hospitals almost all have clinical biographies on their consultants and various departments - this is because the internal marketplace and options to patient choices are very different in each country. Your GP has no more ability to find out what consultants there are in Scotland and what they know than you do. This is why GPs here will normally just keep referring to the consultants they already happen to know at the nearest hospital. Its incredible but that is how it is. The private hospitals all have variable information about the individual consultants who work from their premises.

The NHS view is that the system in the USA has the balance of testing and medical intervention wildly wrong. Again, not judging, just explaining. You are likely to be tolerated if you take RSDSA guidance to a consultant but they won't agree to follow it. It doesn't match their own protocols and budget allowances and they will think it is pointless overkill which is designed to fit a system where doctors make a living by doing fear more testing, treating and medicating than is needed. This is partly the ethos of the medical profession in the UK, partly budget constraint and partly substantial ignorance of the condition. You have already alluded to the fact that your doctors think you are over-reacting and you can expect more of this reaction if you produce the guidance developed by RSDSA for the system in the USA.

The one document that you can expect your GP and other consultants to take more notice of is freely available to download from the Royal College of Physicians website. It is called "Complex regional pain syndrome in adults - UK guidelines for diagnosis, referral and management in primary and secondary care". It represents the only "official" UK guidelines for the treatment of CRPS which was put together by a multi-disciplinary team based on the then available evidence base. I don't think it is a particularly great or impressive document. It plays very safe and is very much in line with the typical NHS ethos of minimal intervention and treatment. It fails patients, especially those of us with very complex and rare presentations because it fails to acknowledge these and seems to regard physiotherapy as the fix for everything and everyone (in spite of the minimal evidence base provided by double blind, placebo controlled clinical trials for physiotherapy) I don't think you will find much in there to assist in your current attempt to find prophylaxis treatments to minimise surgical or pre-surgical testing risk. However, you can't have your credibility questioned by your doctors if you take that document with you or refer to the advice given in there.

I'm sorry if this sounds negative, as I said, I don't do emotional support, just factual information which is one aspect of what you are asking for. I have also already been through all of the questions you are asking within the particular context of the unique Scottish healthcare system and I have done years worth of research into UK consultants' expertise from all the available sources and medical journals as well as taking the initiative at my own cost to go abroad to a leading global expert in the field of treating and researching CRPS.

If it's any consolation, although my CRPS symptoms spread to affect the whole of my body, I have never had any adverse effects from having blood taken with normal needles (and I've had a LOT of that done). When I have had extensive medical testing for other medical issues, my consultants have been prepared and able to find alternatives which carried no risk of damage which could have caused trauma or subsequent surgical intervention. I however, have never been fortunate enough to have had any kind of remission, only ever worsening of my symptoms unrelated to any medical procedures so I have less to lose than you do.