In this last edition of the PAE newsletter in 2016, we are going to give you some exciting news. PAE has been trying very hard and for a long time to increase how it can influence European policy regarding chronic pain and all the issues chronic pain patients encounter in their daily lives.
At first one would think about health issues such as right and proper medication availability, access to qualified pain specialists and pain therapies; both fundamental and applied research on chronic pain. But there are so many more items which make life for chronic pain patients difficult.
What to think of rehabilitation and reintegration into the workforce or educational options?
What to think of the stigma which patients with invisible conditions face? Or what to think about adjustments to housing or support devices, traveling, visiting social events like theater, movies, football matches and so on? For healthy people these are so normal one doesn’t think about what kind of problems they can give to those with a chronic pain conditions.
For this reason, PAE has developed an internet survey which will be available on the websites of PAE and its members. It is available in 15 different European languages. We urge you to ask your members and all other chronic pain patients to fill out this survey in order to collect as much information as possible. After a careful analysis of the results, we will publish this on our website and also provide the relevant information to our members so they can advocate for better options in their own countries.
On a European level we will use these results to strengthen our lobbying activities.
If proven successful, this survey would be a start for other surveys on the various topics mentioned above.
Further to this, we are working very hard on the Written Declaration 112/2016. We are still counting on your support: ask all your national MEPs who have not yet signed. Go to http://www.brainmindpain.eu/?p=717 – click on the ‘paper clip’ sign in the middle of the page and go to your country’s page to see a list of MEPs. Just before the end of year break, the counter stands at 149 signatures. That means we still have a lot of work to do and so have you and your members. Inform your members of this and ask them to write to all their national MEPs. Let the MEPs know that pain patients are here and that we would like to be listened to. Get their support.
Once we succeed, this will be an important first step towards more specific written questions to the commission which can lead to oral questions which could lead to a formal debate in the European Parliament. So you can see the importance of this first step. Your help is essential in this.
However, these are not the only steps we are taken to improve the patients’ situation. Together with the SIP partners, we are preparing the next SIP which will be held next year, June 8 & 9 in Malta.
This will be held under the patronage of the Maltese presidency and it is an opportunity to influence the European Councils’ approach towards chronic pain.
Besides these activities we are trying to get more involved in DG SANTE’s policy activities that are relevant to the chronic pain patients.
We are also happy to announce that we are in the process of developing a European grant for ‘innovative research where patients are in the lead’ and which is aimed towards the patients’ needs. Again, this is an important step forwards in patient centricity.
The Brain, Mind and Pain interest group is working very hard on the Written Declaration and is also busy in involving as many MEPs to our cause as possible and is addressing the same important items such as employment, stigma and research. In view of the results of the latest meeting, this is developing very well.
Last but not least I’m happy to mention that there will be an awareness video available for our members subtitled in different languages. This video is free to be used by our members.
You will read about the activities of our members and some of the outcome of the latest board meeting.