When we started the project Pain Patient Pathway Recommendations November 2012, we were not aware what impact it would have for our members regarding their input.

For the patients associations it whit relatively easy to retrieve patient information on the patients rights.

More difficult was it to retrieve this information from the the different countries ministries. Till so far we succeeded only in 10 of the 18 involved countries. Discouraging was it to find out that some countries simply refused to cooperate. This is indirectly a confirmation that these countries don't respect patient rights at all, or at least have no intention of improving the situation for patients. If it are chronic pain patients or others.
However this was something which did not really came as a surprise for the patient associations as we were informed on that by our members. We only hoped that the situation would be improved by now.
More disappointing was it to find out the lack of willingness of professionals operating for the benefit of chronic pain patients to fill out the questionnaires. The excuses they provide for that showed not much respect for the chronic pain patients in general. In our opinion has everyone who is involved in the chain of treatment in a professional way a roll to make sure if the patient rights are respected.
That counts for the treating physician but also for the manager of the hospital, the nurses involved in the treatment, the specialists involved in research the GP's the Psychologist and all others. An excuse as " we understand the need of it but we think that the medical professionals should organize that" is the best example of not excepting its own's responsibility in this. It is cheap and doesn't respect the patient as an individual who should be treated whit respect and dignity.
One of the things which these first results clearly shows is that regarding awareness for chronic pain patients rights a lot has to be done. Not only for the patients but even more towards the healthcare professionals and the policy makers. It is not only in one or two countries but it is across Europe. An European approach to this would be logical and I'm sure Pain Alliance Europe would support and or initiate such a champagne. We also would push for better education for the health care professionals because if nothing is done in this area we are still facing these problems in twenty years from now.
We are going to continue whit this project and try to get as much information as possible and present a final report somewhere in October 2013.
I would hope that my remarks of now should be withdraw then because everyone did participate.

Joop van Griensven
President Pain Alliance Europe.