Recently I have realized that as a chronic pain patient, every day you have to work out what you can achieve that day. You need to find that balance between what you can do in your mind and what you can do with your body – and what you should do to feel good. You find that everyday struggle that they call self-management, being in charge of yourself.
This sounds logical and is indeed logical for everyone except for policymakers. They still won’ t accept that. They still believe that everyone is the same and reacts in the same way according to the rules that were set up in the previous century.
Pain Alliance Europe together with the European Pain Federation, with EFIC and with the support of the European Commission has developed an expert group on the social impact of pain with the European Health Platform. In this newsletter, you can read more on how to participate in this forum.
The past days showed me the importance of the platform to pain patients. We, as patients, can tell the world what it is like to live with chronic pain. We and we alone can tell the world what, in our opinions, are the best practices according to our wishes. So raise these matters on the platform. Help the policymakers in making new policy which will improve the quality of life for people living with chronic pain.
But this is not the only thing you will read in this newsletter.
What about the Brain Mind Pain Patient-Centered Innovation Grant? This is your opportunity to make a change for the patients you represent. This grant, from patients, by patients and for patients is the ideal way to do something for your patients, to show that patients can make a difference for patients. You know better than anyone what kind of easy things can be done to help to improve the situation; what can help to get a certain treatment to the patient. Now you have the opportunity to have that researched, so see if what you have in mind can be put into practice. So take this opportunity and make a difference.
We also report on our response to the WHO’s consultation. You can also play a role in this, so read about it carefully. We have news from the upcoming Brain Mind and Pain interest group meeting in the European Parliament. We have some information and how SIP will develop. We have news from our members and some activities we have done in the past period. So more and more reason to read carefully through this newsletter and follow up on the suggestions.
Joop van Griensven