I am a Scottish-based (Edinburgh) Canadian who has suffered from chronic pain for about a decade. It has taken away from me most of the trappings of a "normal" life, as I'm sure it has with many of those reading this. After years without results from treatment at the pain unit at the Western General Hospital, I sought 2nd opinions back in Canada. After 1 1/2 years, I found an eccentric, old Chinese doctor (I would be greeted with "I'm 76 years old, and I don't have to be here, you know!") who treated me with a combined lidocaine & ketamine infusion. After 45 minutes on an IV, I would soon be restored to about 95% of my pre-pain self, for a period of a month. Armed with this, I returned to Scotland, hoping to resume said treatment. It has been OVER TWO YEARS now, and I am STILL fighting with doctors in order to have it (mine are not familiar with it, and have no interest in touching it, and prefer I stay on VERY problematic opiate-based treatment (mostly tramadol)).

I am hoping SOMEONE out there is based in Scotland (preferably; or the rest of the UK) who has experience with receiving such treatments, and can point me in the direction of doctors willing to administer it! I look forward to any replies.

-Deryck

Welcome outaouals.

Someone will be along to help.

Welcome to NT!

I sure empathize with your pain and I'm so sorry it's been such a battle trying to find ketamine/lidocaine treatments.

These meds are talked about quite a bit over at the RSD forum
Here's the link to take you there:

http://neurotalk.psychcentral.com/fo...aysprune=&f=21

I hope something will soon come through for you.
Here in the states it's getting harder and harder to get adequate pain relief do to strict DEA guidelines. Doctors take off running the other direction it seems.

Caring!
Rae

Deryck,

It is great to have you come and be with us. You will find a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thank you so much, Rae! I will give that forum a good browse in time. I am still getting used to using the site (I don't find it intuitive... or perhaps I'm just a bit too dopey on tramadol), but am encouraged by the possibilities it offers. I've always shunned "pain groups", as I've found listening to people commiserate about how their pain makes them feel makes me feel worse (while it DOES work for others). The fact that this site has a big emphasis on treatment strategies I find potentially very useful. I am fighting a battle of personalities with my doctors here; very frustrating when I have literally handed them a dossier with the "recipe" for resuming a proven treatment, but they make unconvincing excuses NOT to do it, favouring opiates. If I could find a ketamine-&-lidocaine-sympathetically-minded doctor, I would be over the moon!... however it also has to be on the National Health Service, as I cannot (like most people) afford to go private (in Scotland; in Canada, I'm not sure if most specialist medicine is even ALLOWED to be practised privately, which may shock Americans). Once again, thanks for welcoming me with pointing me in a potentially useful direction! Take care. - Deryck (AKA outaouais)

Perhaps you could also help me on a silly technical matter too! I've been trying to find a way to send a message specifically to the only person I've so far found who is Scotland-based, getting the sort of infusions I'm seeking, but I can't figure out how to do it (and the FAQ doesn't seem to help). Specifically, I am trying to reach Malawigirl08. If I can not be shown how to contact her, perhaps you could pop her a note to please get in touch with me? Any assistance would be greatly appreciated!

Outaouais, you should be able to send a message yourself now that you have made the specified number of posts.

If you click her name on the left of any post she has made, a drop down list will appear. Private message is the second option. Another way is to visit her profle and leave a visitor message.

Please contact a moderator if you continue to have problems sending a message.

outaouais
The person you are trying to contact with a personal message hasn't been active on this site for a very long time. Most people drift in to the CRPS forum and then drift back out after a while as 'real' life takes over. It is unusual for anyone to remain a regular, long term poster on that forum.

You don't say whether it is actually CRPS that you have been diagnosed with or whether it is something else. In Scotland that will matter. The NHS is very good at using a 'lack of evidence base' to refuse a patient anything that they don't want to administer for any one of a whole multitude of reasons. They are also adept at ignoring a clear and supportive evidence base when it suits them and they don't want to give a particular treatment. If you can provide details of a set of good quality clinical trials in reputable, peer-reviewed and published journals which show efficacy of the specific infusion you want for the specific condition you have been diagnosed with then you might stand a chance. Just being able to show that it is done (even routinely) in other countries or even that you have had it administered abroad and feel that it worked well for you won't be enough.

The reality of pain medicine in Scotland is that it is extremely conservative and certainly with CRPS, the symptomatic treatments available are really very limited. They are probably 10-15 years behind what is considered standard treatment in continental Europe. This is partly because of the way in which the "internal marketplace" in the NHS in Scotland operates. It is radically different to the way in which the NHS is set up and operates in England.

I can't comment on the particular clinic you are attending but I suspect you have virtually no chance of obtaining the particular drug treatments you are looking for. It is unlikely that you will have any better prospect in a different hospital and, in fact, you may be labelled as drug seeking, "difficult" or a hypochondriac if you attempt to get your GP to refer you to another pain clinic especially outside of the Edinburgh area. If, however, you can go to your GP with demonstrable evidence of a particular, individual consultant who is a known specialist in your diagnosed condition and/or who has a special interest in the specific treatment you are looking to try, this might persuade your GP to refer you elsewhere. Otherwise it will be very difficult.

If you have been discharged by the pain clinic then you could go to your GP and ask for a new referral. In that case you could ask your GP to refer you to a specific, different consultant or a different clinic but you would need to explain why you wanted to go to a different person/clinic and you may not find that the position they take is any different. Most people don't know this but in Scotland, there is no national or even regional list or database of all the NHS consultants and their areas of interest or expertise that GPs can go to to match up a patient's needs with a suitable clinician. GPs rely purely on their local knowledge or relationships with hospital doctors whom they either know or have come across in their dealings with other patients. If you want a referral to someone with very specific specialist experience, you would need to somehow find out if such a consultant exists and where they are, then take the information to your GP and make a compelling enough case for him or her to make the referral to that person.

For CRPS, the UK Centre of Excellence is not in Scotland - it is in Bath, England. It is possible in certain circumstances for a Scottish GP to obtain approval for a patient to be referred to a Centre of Excellence which is in England. The process varies in its complexity depending on the circumstances of the diagnosis you have and the treatment options available in Scotland. I can tell you though that even in Bath, where CRPS is concerned, they adopt very conservative approaches to treatment and pain management. You would not persuade them to give you the kind of treatment you are looking for.

If you can afford to see a pain management consultant privately you may be able to find a consultant who is willing to be a bit more open to listening to your requests but this doesn't mean it will be any easier to persuade that person to provide the particular treatment you are looking for. The doctors who do private work in Scotland are motivated by money, not altruism or the excitement of dealing with rare and unusual patients. Access to treatments is much faster if you go privately, the conditions are invariably nicer and you may have a wider range of treatment options, especially ones that are expensive, but risky procedures are less likely to be available to you.

I know this isn't what you wanted to hear but as someone who has extensive experience in this area - both the area of medicine and geographically, I think it is only fair to be honest with you about your chances. I think you would need to be extremely lucky and somehow happen to find a slightly maverick consultant, perhaps with research and clinical practices, who is particularly interested in your condition and your individual case and who is prepared to push the NHS rules and procedures in order to get this kind of treatment.