Written Declaration – Save the Date: 29 November 2016 – EU Parliament Brussels

ACCES TO EMPLOYMENT FOR THOSE AFFECTED BY NEUROLOGICAL DISORDERS AND CHRONIC PAIN CONDITIONS

This is the title of the Written Declaration which PAE together with EFNA within the Brain, Mind and Pain interest group have been working on for the past months. The text of the Written Declaration is to be found on the dedicated website.

If approved, The Written Declaration will be a very valuable document to use at local, national and European level, for example, in:

  •  Advocating for the implementation of employment rights for those affected by chronic pain conditions
  • Raising awareness of the stigma and discrimination faced by those affected by chronic pain at work
  • Ensuring relevant EU legislation on access to employment is applied at the national level
  • Highlighting the existence of EU funds to improve accessibility to the workplace for those who wish to regain or remain in employment

We are pleased to have 22 MEPs signed up as co-authors of this Written Declaration. However, we will need to encourage a minimum of 376 MEPs  to sign to show their support within three months of this launch in order to have it adopted!

Save the Date: 29 November 2016 – EU Parliament Brussels

Next action in the EU Parliament – 29 November 2016 – Breakfast meeting with the support of – join us!

We need your help, your commitment and your contribution: we need you to inform your members about this initiative and ask them to contact your MEPs asking them to sign this Declaration.   To help you with this:

  • We have prepared a template e-mail which you can translate into your own language.
  • We urge you to ask to add a personal reason why you want the MEPs to sign.
  • We have prepared a list of the contact details of the MEPs by country.
  • You can find them by going to the website

And anyone who is reading this who is not a member of a PAE, you may of course do this also. We would appreciate this very much.

Please keep in mind the MEPs are there to be the voice of the people of Europe. We all have voted them into that position. Use your right to contact them and ask them to sign and provide better options for people with chronic pain.

We will come back to you on this because this is only the beginning.  This is going to be a three month operation in which we will pressure the MEPs as much as possible, in a polite way.

On the same website as you can find the addresses and the template e-mail you also can see a list of MEPs who have signed already. This list will be updated every week. So please, before you send an e-mail or reminder, check that list to see if the MEP has already signed!

We will also reach out to the MEPs by social media, Twitter and Facebook. We will be tweeting about that from the @BrainMindPain twitter account. So give us a follow, retweet our posts and convey our messages to your MEPs.

Please let us know at euaffairs@efna.net when you get a positive reply from your MEP so we can follow up.

So keep checking the website  And find out whom to reach out for.

100 cities against pain

Join all the different events going on on each of your cities. DON’T be indifferent and start making a difference! In Galicia join PAE members LIGA REUMATOLOXICA and REDE ESPAÑOLA DE FIBROMIALGIA at the Alameda of Santiago de Compostela next Saturday at 18 hrs to walk/run together and raise awareness of the tremendous burden that Chronic Pain causes to Patients, their families and society in general. JOIN THEM PLEASE! Here are the details: 100 Cities Against Pain Event in Galicia, Spain Title:”Todos fortes contra a Dor” (Everyone Strong Against Pain)

Where: Alameda, Santiago de Compostela

When: October 3rd, 18:00 hrs

Organizer: Liga Reumatoloxica Galega and Rede Española.de Fibromialgia Endorsed by: Fondazione Isal, Pain Alliance Europe, Agora, No Pain Fundation among others.

Registration: www.carreirasgalegas.com
#zeropain15 #nopain15 #fortescontrador

European Charter of the Rights of citizens Over 65 with Chronic Pain

SIHA – Senior International Health Organization – has the great pleasure to invite you to the Press Conference about the “European Charter of the Rights of citizens Over 65 with Chronic Pain”. The objective of this Charter is to reduce the barriers for the access to appropriate therapies and to ensure the continuity of care for elderly people with chronic pain in UE Countries. Registrations by e-mail to: info@sihassociation.org by Monday, the 26th of October. For people without European Parliament access badge, the following information is required: full name, date of birth, ID number (passport or ID), Profession and Organization. Please bring the Identity document at the entrance. For further information see our website http://www.seniorinternationalhealthassociation.org/ (For external guests the meeting point is in the foyer of the ASP Building – facing Place du Luxembourg – at 12.45 you need to be accompanied to enter the meeting room).

Tackling the Stigma of Brain, Mind and Pain Disorders – Meeting Agenda

We have the great pleasure to invite you to the upcoming meeting of the Interest Group on Brain, Mind and Pain and Interest Group on Mental Health, Well-being and Brain Disorders.

Please find the agenda below.

 12.00h              Arrivals and Registration
[Note: Please assemble in the foyer of the ASP Building before 12.00h to be escorted to the meeting room, where a sandwich lunch will be available from 12.15h]

12.15h              Networking Lunch

Chairperson: Ann Little, President, European Federation of Neurological Associations

13.00h              Opening Address: Marian Harkin, MEP and Interest Groups’ co-chair

13.10h              OUR PERSONAL EXPERIENCE OF STIGMA
What stigma means to me and my family: What should be done?

THE PATIENT: Liisa Mikkonen, Person affected by chronic pain

THE PARENT: Andrea Bilbow, OBE, Parent children affected by ADHD

THE CHILD: Emily Benson, Daughter of person affected by Dystonia

13.40h              THE EVIDENCE OF STIGMA
Prevalence & impact of stigma in the wider patient community: What can we do?

BRAIN: EFNA Patient Experience Survey, Prof. Matilde Leonardi, Neurologist, Besta National Neurological Institute

MIND: GAMIAN-Europe Pan-European Stigma Survey – Paul Arteel, Executive Director, GAMIAN-Europe

PAIN:  Patient Pain Pathway Recommendations – Joop van Griensven, President, Pain Alliance Europe

14.10h            Keynote Address: Jürgen Scheftlein, DG-Santé

4.20h              Discussion of future plans– with comments from MEP co-chairs and the audience

15.00             CLOSE

 

SAVE THE DATE! The next Worldwide Day “Hundred Cities against pain” will take place on the 3rd of October 2015!

The grounding principle of Isal Foundation is the promotion of the concept of pain perceived as a disease, a disease that can be treated and cured. ISAL is characterized by a supportive and operating network, composed of 16 regional ISAL headquarters, more than 100 operative entities involved in the organization of events and concrete actions aiming to raise awareness in the field of pain, the network of patients’ association, first of all VitaINdolore, the chronic pain patients’ association established and created by ISAL.
The social activity carried out by ISAL consists of several actions:
– To recognize chronic pain as a disease that can be prevented and treated.
– To support the national application of law 38 (the right that guarantees the access to pain treatment centres and palliative care).
– To solicit and stimulate the media to contribute to the struggle against pain.
– To encourage and support healthcare initiatives to prevent and manage chronicity in order to meet the needs of people with chronic pain.
– To promote the certification of disability for people living with chronic pain.
– To raise awareness and to inform the population on the prevention and the treatment of pain.
– To fundraise in order to support the research on chronic pain.

In order to carry out such actions, ISAL organizes each year since 2011 the Worldwide Day Hundred Cities Against Pain. The Day has received the high Patronage of the President of the Italian Republic, the Patronage of the Presidency of the Italian Ministers’ Council, and the Patronage of the Italian Conference State Region. In addition, the logo of the Italian Semester was among the symbols that the Foundation has exhibited on its instruments.
Thanks to 100 Cities Against Pain, ISAL Foundation is present in cities’ main streets and squares, goes to Italian hospitals to talk about pain, to raise awareness, to make pain more visible as a real and dramatic presence and to let people know that this disease can be cured and must be cured.
The number of local entities involved in Worldwide Day has visibly increased over the years. The 2015 edition, scheduled on Saturday, October 3rd, will involve 102 Italian cities, 8 cities abroad and more than 90 Italian hospitals. Like every year, a press conference is held the week before the 3rd of October at the Senate Library in Rome, a key meeting that is annually attended by Italian political personalities, guests from Italy and abroad and representatives of the patients’ associations. This year, the Press Conference will be held on the 25th of September. During the same week, the information campaign on chronic pain will be organized in the hospitals involved in the Day.
Individuals, patients, doctors, associations, and other organizations can join the celebration of the Worldwide Day in different ways: by organizing their own events in cities or hospitals and/or by supporting the initiative website and social networks.

100 Cities Against Pain is also supported by the Web campaign #Zeropain, a campaign that brings together people from all-over the world and that during the International Day share their selfies and comments to say “No!” to chronic pain.
Every person and every organisation can contribute to the World Day Against Pain, by joining the online campaign #zeropain.
The steps are very easy:
1) Take a picture of yourself holding a paper with the writing ˝I’m against Pain˝ in your own mother tongue
2) Post this picture on Facebook, tagging the page of ISAL Foundation, or post it on Twitter and Instagram adding the hashtag #zeropain15

Contact and information:
Chiara Moretti
Tel.: 00393451426469
Mail : chiara.moretti@fondazioneisal.it
Website: www.fondazioneisal.it

Make Chronic Pain a Health Priority in Europe

Brussels, 12/12 /2014-Patients and citizens send recommendations to the new European Parliament and the new European Commission

Patients (Pain Alliance Europe, PAE) and citizens (Active Citizenship Network, ACN) call for urgent action for chronic pain management at a national and EU level urging policy makers to:

  • Prioritize chronic pain at an EU level
  • Increase public awareness of chronic pain
  • Educate healthcare professionals at undergraduate and graduate level about chronic pain management
  • Stimulate research and data collection by continuing chronic pain research

Patients’ associations have done a lot to improve the situation for chronic pain patients and empower them, but there is still a lack of interest from the healthcare society in general and institutions in particular. Only two notable legislative measures have become reality in two EU countries: Italy and Ireland. Italy was the first country in Europe to adopt a law in 2010 which defines pain therapy as a set of diagnostic and therapeutic initiatives intended to control and suppress moderate to severe chronic pain. Also, chronic pain has been identified as medical specialty this year (2014) in Ireland.

In 2014, more than ever, with Italy holding the presidency of the EU Council, it was time to bring this initiative at an EU level. Due to our recommendations and the letters sent by our members to their national ministries and at the EU level institutional bodies, ministers from the 28 EU member states met in Milan on the 22-23 of September and reached a common position. They recognized a need to create a European network ensuring training of professionals in the sector and to exchange information on the effectiveness of pain therapies for the weakest population groups.  Chronic Pain is now a priority in the EU as a whole.

MORE INFORMATION ON THE ACTIVITY OF PAE AND ACN

Pain Patients Pathway Recommendations (PPPR) PROJECT

Pain Alliance Europe and Active Citizenship Network with the support of Grünenthal GmbH worked together in order to become a strong European Pain Patient advocacy group. They have developed concrete proposals for the improvement of pain management in the EU and encourage active participation of citizens in public policy-making. The result of this work was presented to ministries of health and to many EU bodies in a report called the “Pain Patient Pathway Recommendations”. Please find here a video describing the activity carried out by our organizations in the past three years and also here our joint recommendations.

The first step of the joint project was to conduct a civic survey on chronic pain in order to find out if the rights of chronic pain patients are respected in Europe. 37 associations from 18 countries participated in the survey.  The survey clearly showed that despite the efforts at regional, national and European level, the condition of patients affected by chronic pain is still serious.  Only in France, Portugal, Malta, Sweden the rights of these patients were partially respected, with the other countries having hardly any rights respected, if at all: UK, Italy, Germany, Austria, Latvia, The Netherlands, Bulgaria, Romania, Spain, Slovenia, Romania, Cyprus, Belgium, Finland and non-EU country, Macedonia. Based on the findings of the survey, we have created a set of recommendations which were sent by our members to all relevant institutional bodies.

Chronic Pain in Europe

Around 100 million people, approx. 19% of the adult population in Europe is suffering from chronic pain. This number clearly shows that the reality of chronic pain cannot be ignored at an EU level anymore. Chronic pain is not just a medical problem. It is an even bigger social and economic burden for society at whole: lost working days because of insufficient or non-treatment, reduced working capacity, social benefits, disability payments, etc. That’s the reason why we are also pushing the identification of chronic pain as a disease in its own right or at least as a medical specialty.

 Objectives for 2015

For 2015, our mission and main objective is to push the new EU Parliament, the new EU Commission, and the Institutions at National  and EU level to give a concrete follow up on their commitment made during the EU Health Ministers meeting in Milan, Italy, last 22-23 September. Without concrete solutions and legislation, there is no real progress and this important economic and societal problem will find no resolution.

About us

Active Citizenship Network (ACN) is a flexible network of European civic organizations which are involved as partners in its different projects, addressed to encourage active participation of citizens in European policy-making. ACN’s mission is to promote and support the construction of the European citizenship as an “active citizenship” which means the exercise of citizens’ powers and responsibilities in policy-making.

For Pain Alliance Europe (PAE), quality of life for a chronic pain patient means giving the patient the right to choose the best possible solutions and support to live his life according to his possibilities and wishes. The organization aims to promote awareness for chronic pain, to European society on all areas.

In the name of transparency, please find below the responsibilities of each partner of the project: The political framework of the project is designed by Pain Alliance Europe representing chronic pain patients in Europe. Active Citizenship Network is responsible for the scientific design and contents. The pharmaceutical company Grünenthal GmbH is responsible for financial and non-financial support.

FOR MORE INFORMATION PLEASE CONTACT US AT:

Pain Alliance Europe

Grensstraat 7, box 3 – 1831 Diegem (Brussels) – Belgium

Tel: +32 2 725 01 51    info@pae-eu.eu       www.pae-eu.eu

Cittadinanzattiva onlus – Active Citizenship Network

via Cereate, 6 – 00183 Roma , Italy

Tel: +39 06 3671 81   press@activecitizenship.net   www.activecitizenship.net/

 

 

 

 

 

Word from the President – PAE General Assembly

Opening word GA November 17 2014

2013-11-029

Dear members, representatives of our sponsors or sponsors to be and special guests Sheila Wright and Lone Tjustrup Olufsen.

In front of you, you see a happy man.

Happy because so many of you have come to join us at this General Assembly.

Happy because I have the pleasure of working with a board who is not only critical but even more a group of warm people with a heart for Pain Alliance Europe’s mission and willing to make an extra effort for this.

Happy because more companies are willing to support Pain Alliance Europe in its activities.

Happy because the name of Pain Alliance Europe is growing in Europe.

Happy because we see us supported by a great secretariat which can cope with changes without damaging the service to anyone.

All and all 2014 has been a good year for PAE so far.

Having said that, we are aware there is a lot more to do so there is no time to sit down and relax. You may have read about our plans in the activity report you received .

We are also aware that the companies who are supporting us are under a great pressure of cutting down expenses. It is for us now, more then ever, time to think in practical sustainable projects to ease the way for the contact person within the companies  to find the budget.

It is also now time for us to put more pressure on the European body’s and national body’s to do something about the living conditions of people with chronic pain. Especially now since the EU ministers are talking together about palliative care and pain management for the first time. It is our common responsibility to convince them to keep talking about this during their sessions for the upcoming years until a complete plan of action is submitted and accepted to improve the quality of life of people with chronic pain. We have to convince them that chronic pain is not just a medical problem but even a greater social and economical problem. Cooperation between the commissioners and / or ministers of these three sectors  is of great importance to achieve progress on this issue. They have to stop with the silent thinking.

As you may have heard here in front of you is not only a happy man but also a man supported by a board with a great drive and a mission which they want to fulfil. This however, can only be done with the support of you all.

We, the board, will all make efforts to improve our communication towards our members and also improve your communication towards us , in order for all of us to deliver real added value to one another.

For me personally, you are already an added value only for the simple reason that you gave me the possibility to know you all.

 

September 27 – Hundred cities against pain

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On Saturday, the 27th of September 2014, over 100 italian cities and 12 countries from 5 continents, will celebrate the 4th edition of the World Day ˝Hundred Cities Against Pain˝, thanks to the initiative and organisation of ISAL Foundation (www.fondazioneisal.it).

Please see the message of PAE President for the International Day Against Pain  HERE.

The aims of this celebration are to inform people about chronic pain treatments and pain centres, to raise funds for scientific research and to sensitize political and health institutions about chronic pain as a main public health issue.

In Italy, the chronic pain affects 12 million people (20% of the general population), with a strong negative impact on the quality of life, on professional life, and on direct and    indirect costs to social life and health. As a matter of fact, it is estimated that every year, over one billion of working hours are wasted and around 2 billion Euros are spent in medical visits and treatments for chronic pain.

The World Day ˝Hundred Cities Against Pain˝ aims to  emphasize that there is no reason  for tolerating pain.

A very important Italian achievement is the enactment of the Law 38/2010, which guarantees the free access to the medical treatment for pain.

On the 27th of September, in the squares of the main italian cities, volunteers and    medical doctors in white uniforms will    inform the public about finding treatment for chronic pain, by distributing the    guidebooks ˝The first aid kit for pain˝, developed by the group of experts  fom ˝Change Pain˝. Some local goods, such as pasta from the old pasta factory Masciarelli, and entra-virgin olive oil by Fontedoro will be sold, and the funds raised will be used for scientific research.

Every person and every organisation can contribute to the World Day Against Pain, by joining the online campaign #zeropain. It is very easy:

1)Take a picture of yourself holding a paper with the writing ˝I’m against Pain˝ in your own mother tongue

2)Post this picture on Facebook, tagging the page of ISAL Foundation, or post it on Twitter and Instagram adding the hashtag #zeropain

Through this, ISAL hopes that the Italian experience of having the law 38/2010 that guarantees the free treatment of chronic pain can inspire other European countries.

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Societal Impact of Pain Symposium – Brussels, November 17-18

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REGISTER NOW!

SIPOnce ​a ​year ​politicians, ​budget ​holders, ​decision ​makers, ​HTA ​bodies, ​health ​care ​professionals, ​pain ​advocacy ​groups ​are ​gathering ​for ​the ​annual ​SIP ​symposium ​in ​Brussels ​to ​create ​awareness ​about ​the ​societal ​impact ​of ​pain ​in ​Europe ​and ​to ​develop ​and ​foster ​European-wide ​policy ​strategies ​& ​activities ​for ​an ​improved ​pain ​care ​in ​Europe. ​The ​SIP ​symposium ​also ​provides ​the ​opportunity ​ ​to ​exchange ​of ​information ​on ​best ​practices ​and ​to ​network ​with ​stakeholders ​from ​all ​over ​Europe. ​ ​​Please ​join ​the ​discussion ​on ​the ​ ​SIP ​Group ​on ​LinkedIn ​where ​more ​than ​2500 ​members ​of ​the ​SIP ​global ​community ​share ​and ​discuss ​trends ​and ​issues ​relevant ​to ​field ​of ​pain ​care. ​

The ​timing ​of ​this ​years ​SIP ​symposium ​is ​scheduled ​to ​coincide ​with ​the ​Italian ​Presidency ​of ​the ​EU ​council ​as ​during ​this ​period ​for ​this ​first ​TIME ​ever ​all ​EU ​Health ​Ministers ​will ​be ​discussing ​the ​societal ​burden ​of ​Chronic ​Pain ​and ​Palliative ​Care ​and ​will ​be ​actively ​debating ​how ​to ​address ​this ​health ​policy ​priority ​in ​the ​years ​to ​come.

Considering ​the ​importance ​of ​this ​announcement, ​it ​was ​decided ​to ​celebrate ​the ​5th ​SIP ​symposium ​by ​inviting ​Nick ​Ross, ​one ​of ​the ​most ​renowned ​European ​journalists ​and ​scientific ​moderators ​to ​lead ​four ​interactive ​panel ​discussions. ​Nick ​Ross ​has ​a ​long ​interest ​and ​involvement ​with ​healthcare ​policy ​and ​an ​interest ​in ​pain ​management ​( ​you ​can ​find ​a ​brief ​CV ​below* ​and ​more ​details ​can ​be ​found ​on ​http://www.nickross.com/