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.
“Om gek van te worden” gets translated
During the past two years, a film crew followed six chronic pain patients, varying in age from 10 to 80, in their struggle to cope with everyday life. The result is a documentary which has a high level of recognition in certain circumstances as it shows exactly what chronic pain patients and their near ones, experience on a day to day situation. It shows happy moments and sad moments: it shows the life of a chronic pain patient.
This documentary “Om gek van te worden” was first shown during the Dutch ‘Week against Pain’, end September 2016. Because of its universal character, PAE was asked by the production team if it was possible to make this video accessible in more countries. The production team with a little help of PAE was able to find a sponsor for that idea and now we are able to provide the video subtitled in five major European languages: German, French, English, Spanish and Italian. If we can find volunteers in other countries who can make translations, we can add more languages. So we are counting on our members to increase the numbers of European citizens which can see and follow this video.
After all the preparations and alterations, this video will be available for all our members to be used in their own national awareness campaigns.
We would like first of all thank the individuals who were willing to have the crew follow them for 18 months in both good and bad times and tell about their personal feelings. Then, of course, the crew of Happy Motion who put together such an impressive documentary. Finally, we thank the sponsor of the translations for making it possible that the whole of Europe can see and follow what it is to be a chronic pain patient. It doesn’t make a difference if you are 10 years or 80 years old. Perhaps they express themselves differently, but the issues are the same.
All the members will be informed how they can get hold on the video. We will try to get it available through our website but this will depend technical possibilities.
#MakeWorkWork – Launch of the Written Declaration
Manuela Messmer-Wullen then told the group of six European parliamentarians and three advisors of her anger and loss of confidence after a stroke changed her life and how an understanding employer helped her regain her self-assurance. ‘We need to look at examples of good practice for example flexible working for people with chronic illness.’
Marian Harkin was shocked by the numbers affected: 1 in 3 Europeans are affected by a brain disorder and 1 in 5 by chronic pain. She emphasised the importance of patients and their families contacting their members of the European parliament (MEPs) to sign the Written Declaration. She explained a Written Declaration is statement of policy which is placed before the Parliament for signature. Any MEP can sign if they support the Written Declaration and would like it to become the official position of the European Parliament.
We need 377 MEP signatures before 24th January 2017 for this to happen.
Presentation on patient-centred care
On November 7 and 8, the president of PAE, Joop van Griensven, attended a meeting of a EIT health project PAE participated in, held in the University Medical Centre Groningen. The meeting was called Bridging the Gap. The president had the pleasure of being the first speaker to address the issue. His presentation was called: Patient-centred Care from a Patient Perspective. In his speech the president addressed the following seven items.
For whom do we want patient-centred care?
What is it, according to the patients?
What are the benefits for the patients of patient-centred care?
Where do we start with this?
What is needed for that?
What hurdles will we need to overcome to perform patient-centred care?
What can be done?
The speech included some controversial questions such as ‘Who is the expert, the professional or the patient?’ and ‘Where is the need for protocols?’ These led to some strong discussions with the final result that ‘the position of the patient and his ideas, thoughts always should be the base of any therapy’. People don’t become stupid overnight when they become a chronic pain patient. They still can think normally.
The presentation was well received and as a result PAE has been asked to get more involved in a follow-up project. Preparations for that will start in 2017.
EIT Health is one of the largest healthcare initiatives worldwide. Its goal is to sustainably advance the foundations of healthcare and thus promote the future conditions for healthier living and wellbeing of people across Europe. EIT Health is leveraging the expertise of more than 130 leading organisations spanning key areas of healthcare such as Pharma, MedTech, Payers, Research Institutions and Universities. Chosen by the European Institute of Innovation and Technology (EIT) to form EIT Health, the consortium offers best-in-class research capabilities, higher education and business expertise.
The full text of the presentation can be found on the PAE website.
Brain Mind and Pain Interest group meeting, November 29 in the European Parliament.
On the 29th November, the European Parliament interest group on Brain Mind and Pain had its last breakfast meeting of 2016. The meeting was hosted and chaired by MEP Jeroen Lenears and attended by around 50 people. The discussion was about the relationship between work and employment.
Presentations were given by Antonella Cardone, executive director of Fit For Work Global Alliance and by Boglárka Bola from the prevention and research unit of EU-OSHA. Both addressed European projects on the ability of people to return to work, to stay in work and the issue of safety at work.
Chris Wells, president of EPF/EFIC, stated their support and willingness to help with initiatives to achieve this.
Paul Baart from Fit For Work showed the results of their project and emphasized that doing projects is nice and successful, but implementation of these results on a larger scale is very difficult because of the way the systems are built. This relates to the written declaration which was initiated by the Brian Mind and Pain interest group on ‘access to employment for those affected by neurological disorders and chronic pain conditions’.
Jeroen Lenears who chaired this meeting said how the big turn-out emphasized that this topic has a huge interest of the members of the European Parliament. Work, staying in work or finding work is for everyone is a better option for the person involved, for his family, for the employer for society. Everyone benefits from that.
Staying in the job often can be achieved by simple solutions and we, the stakeholders should be able to find smart solutions for that. Some solutions were brought forward during the presentations at this event and in earlier discussions.
MEP Elena Gentile, also a great supporter of the written declaration, emphasized the need of collaboration between the stakeholders and mentioned the relation between the patients and their loved ones is one of the most important reasons to support any activity in this direction.
After this breakfast meeting several of the attendees visited their national MEPs in the Parliament building, in order to gain their support on the written declaration.
The Chronic Pain Policy Coalition (CPPC) in the UK gets good support from politicians, doctors, pharma and patients’ groups. On 7th December, Marian Nicholson of Pain UK and PAE attended a meeting organised in the House of Commons Jubilee Room, to discuss “Chronic Pain in Primary Care”.
CPPC co-chair, Dr Martin Johnson, a GP, reported on a survey of 1,027 chronic pain patients and their interaction with GPs. A few of the results from the survey, done by the TalkHealth website:
- 43% had had their pain medication reviewed in the last 6 months, but 25% of patients had never had it reviewed at all.
- 83% reported experiencing side effects form their pain medication
- 51% do not feel that their GP understands how to treat chronic pain.
Another speaker told us how poor drugs are overall in treating chronic Pain. Pete Moore of Pain Toolkit (http://www.paintoolkit.org/) agreed with her. They both emphasised that patients should be introduced to pain management programmes immediately and not have it suggested as a last resort when no drug or other treatment has helped.
From Pain Concern, a patient support group, Heather Wallace explained how patients report how incredibly valuable these are. She mentioned that doctors reported reluctance to suggest that patients access support groups because they did not know what information the patient might be given and that support groups were not necessarily permanent, as they rely on volunteer ‘staff’. When networking later with Heather, Chris Hughes and Jean Gavin, all from Pain Concern, we asked ourselves when GPs would realise that they can no longer control the information that their patients see: no use preventing patients from accessing a patient support group when information on the web is easily accessible and not always accurate.
No Pain Foundation is proud to announce that starting from this November 2016 we are Member of the EFIC European Pain Federation
as Contributing Organisation. This is another important goal No Pain Foundation has reached.
Galician Rheumatological League
The Galician Rheumatological League has been very busy these last months. Apart from various articles in the press, interviews on the radio and with Health Authorities from our Autonomic Region and from the Spanish Country, we have the pleasure to share some of the most important activities.
MINDFULNESS: Our psychologist developed a 6 session course of Mindfulness for the control of pain in groups of 6 persons. The course is being taught, with lots of success, in several delegations of our League.
LIGAFLASH AND INFORMATION CAMPAIGN: during the 3rd trimester of 2016, our itinerant photograph exhibition and information campaign have been visiting more cities in our Autonomic Region.
FOR YOUR BONES: We are working on a campaign with 2 aims. On one hand fundraising, and for people who are too ill or live far away from our offices and need the home visit of our psychologist and/or occupational therapist in order to help them cope with their fragile health condition. The other objective is raising awareness and make visible the rheumatological illnesses.
We do it by means of selling for 5 euros bone shaped chocolates in a nice wrapping (orders can be send at email@example.com )
Galician Rheumatological League
At the end of September, the representatives of the association assisted in Bucharest at the Annual Agora Platform Conference, together with lots of European Rheumatological Associations.
The platform was celebrating its 5th anniversary of raising awareness about RMDs.
More info on Agora: http://www.agora-platform.eu/