Social Impact of Pain (SIP) Expert Group goes live!

PAE News

Following the European Commission’s decision to dedicate an Expert Group to the ‘social impact of pain’, communicated during the SIP Symposium in Malta, June 2017 – we are excited to announce the launch of the Social Impact of Pain (SIP) Expert Group. The Expert Group, hosted on the EU health platform, provides pain experts with an environment to exchange, compare and benchmark evidence and best practices on pain management and its impact on society. It will also give an opportunity to learn about upcoming events, campaigns, latest research, current policies, or new possibilities on education.

What’s next?

The European Pain Federation EFIC and Pain Alliance Europe, who are the Group administrators, will provide further guidance for members on how to use the platform practically, and how the project can contribute to EU policy-making via best practices and data sharing, and development of policy recommendations.

Who can join?

The platform is open for health care professionals, pain advocacy groups and patient representatives, politicians, insurances, representatives of health authorities, regulators, and budget holders.

The first step is becoming a member! Registration only takes a few minutes. PLease consult the USER GUIDE which explains all the steps to a successful registration. We encourage you to invite other stakeholders to join as well, provided they are an organisation with a clear interest in public health in Europe.

 

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BMP Grant to fund your good ideas!

PAE NEWS

What does “pain” mean to you? Is it just a word? Or… It resonates? It hurts? Is it you? Is it someone you know? Is it someone you love/care for? It makes you think you can do something about people who suffer (so often without showing it)?

What is it that prevents you from going further? If the answer to this question has the word “money” in it, keep reading. You are in for a solution.

WHAT (are we talking about)?

PAE and Grünenthal, partnering with several organisations concerned by the problem of chronic pain – have created the Brain Mind and Pain Patient-Centred Innovation Grant to promote and financially support patient-centred projects.

Transforming ideas in support for the patients

Your solution’s main objective will be to improve pain patients’ living conditions. It could be anything from research to a practical solution no one has thought about before. Bring a new solution to an existing problem.

Your solution should focus on “Overcoming obstacles in access to treatments”. See all the details in the Call for proposals

WHO (can apply)?

The ideal profile of the BMP Grant applicant: anyone with a great idea and a solid plan to make it happen.

Are you a pain patient or know anyone who is? When confronted with a problem, do you surrender and adapt around it or… Do you do something about it?

If yes, the BMP Grant stands here for you to get the support you need.

We encourage you to take the step further: put a plan together, calculate your budget needs, look for allies and partners, measure the outcome, and give the BMP Grant the opportunity to support you.

Are you alone? get the support of a patient organisation.

HOW (to apply)?

Online application: Submit your answers here (a list of the questions is also provided on request so to be able to prepare offline your answers). Check the indications on how to fill in the form. Study the call for proposals, this document contains all the details needed for you to understand the requests of eligibility and procedures.

Do you still have questions? Drop us an email and we will be glad to guide you through the application process.

WHEN?

The application period is open. Make sure you submit your application before 31 December 2017.

Bonus: All applications received before 15 November are pre-evaluated on the main eligibility criteria and the respective applicants get the chance to rectify the submitted application, thus increasing their chances not to miss any detail.

 

 

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Brain, Mind and Pain Interest Group

PAE News

Invitation

Pain Alliance Europe and European Federation of Neurological Associations (EFNA), in partnership with the European Academy of Neurology and the European Pain Federation, have the pleasure to invite you on the 22nd November 2017 to the next meeting of the MEP Interest Group on Brain, Mind, and Pain:

Ensuring equitable access to high-quality treatment in brain, mind and pain disorders

 

Case-Studies from across Europe

22 November 2017; 8.30 – 10.30 (Registration 7.45am)
Room JAN 6Q1

European Parliament, Brussels

 

REGISTER HERE  by 3 November 2017

Agenda

Welcome                                                                                                                      08.30-08.35h

  • Jeroen Lenaers MEP 

Opening remarks                                                                                                        08.35-08.45h

  • Guenther Deuschl – President, European Academy of Neurology
  • Bart Morlion – President, European Pain Federation

CASE-STUDIES: A Health Professional Perspective

  1. STROKE                                                                                             8.45-08.55h
    Prof. Franz Fazekas will present the results of a questionnaire conducted by the European Stroke Organisation which highlights disparities in access to stroke treatment across Europe. He will also draw on the outcomes of an EAN study which gives an overview of the current practice of neurology across Europe; highlighting examples of good and poor practice – as well as briefly mentioning access to quality neurology education and training.
  2. PARKINSON’S DISEASE                                                                 8.55-09.05h
    Prof. Guenther Deuschl will discuss how many treatment options are now available for PD patients but illustrate how these are not accessible for all. He will also mention a project EAN is preparing which will aim to assess the availability of the necessary health care interventions for neurology patients across Europe.
  3. CHRONIC PAIN                                                                                9.05-09.25h
    Prof. Christopher Eccleston will reflect upon the book European Pain Management, the first comprehensive publication on the state of pain care and access to treatment across Europe. Prof. Bart Morlion will then give a brief overview of the European Pain Federation’s activities and how they help to improve equitable access to high-quality treatment for patients in Europe.

PANEL DISCUSSION: A Patient Perspective                                        09.25-10.10h

This panel debate will give the opportunity to patients and other participants to share their ideas on the issues created by inequitable access to treatment across Europe.  It will give a chance to explore the role that patient organisations can play in ensuring equitable access, and the political support needed.

THE FUTURE – Will Brexit derail progress in both the EU and UK?    10.10-10.20h

 Cooperation across Europe has resulted in benefits for patients. Our speaker will explore how cross-border trade in medicines and medical devices could be disrupted post-Brexit.

Comments, Conclusions and Close      Jeroen Lenaers MEP                10.20-10.30h

Should you able to attend please REGISTER HERE  by 3 November 2017.

 

 

 

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Welcome to the Newsletter

Dear Reader,

After a very fruitful first half year of 2017, it is now time to follow up and consolidate on what has been achieved so far.

After our investments in the Societal Impact of Pain Symposium, our involvement with DG SANTE to get a European Platform for Chronic Pain and the achievements made by our partners within IASP and EFIC within the ICD 11, our investments to consolidate and improve starts now. As a dessert, we were happy to hear about the Council’s conclusions in which the ministers of Health from the 28 EU countries asked for an assessment of the access to pain management in the countries.

However, this also features a heavy responsibility on PAE as an organisation, but also on you members and sympathizers, to inform us how the situation is in your country on the access of pain management. Who is able to follow any treatment? Who gets reimbursed, are all chronic pain conditions included? What is the distance to the pain centre, and is it possible for the patient to actually get there? Gathering all this data is very important for us to be able to formulate our questions for the decision makers. We need to present the situation from the perspective of the patient.

These are only some of the aspects and we need to get insights from patients which would allow a detailed analysis, with a European perspective. This motivates us to continue the European survey on chronic pain project, started in 2016 whose first report has been presented during the SIP symposium. Next year, the focus will be on the topics work/income and social exclusion/stigma.

We also recognize that more research on chronic pain is needed. But then again, research should be aimed at the patients’ needs/benefits. To bring our contribution and make patients’ voice important, PAE together with Grünenthal will issue a call in September on a biennial grant on patient-driven, patient-centred innovation. Patient organisations, being a PAE member or not, are strongly invited to team up with other stakeholders and reply to that call. This is your moment to do something for the benefit of your members, the patients.

You will read more about this furthering this newsletter. Also, you will read more about what our members have been doing or planning to do.

You will read on the outcome of our General Assembly held in Malta in June. You will read about our involvement in the European Pain Federation/EFIC congress in Copenhagen.

You will also read something on our closing event of the Red Balloon project and where you may find the video/photos of the event.

Dear members and sympathizers, it is now time to enjoy your well-earned vacation.

However when “back in the office” remember to bring your contribution to the cause of the patients, by gathering and transmitting the information needed to give the chronic pain patients an even stronger voice than they have now.

 

Joop Van Griensven

PAE President

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EU Health Policy Platform opens to Chronic Pain

PAE News
Expert Group on the Societal Impact of Pain

 

As announced during SIP 2017 by Martin Seychell, Deputy Director-General of DG Santé, a new Expert group has been open on the EU Health Policy Platform to facilitate communication between the stakeholders on the societal impact of pain, e.g. what member states need, what stakeholders identify as priorities among these initiatives and what they propose, but also to find out how the EU Commission may use the tools available at the European level in order to support initiatives in this domain. This is how stakeholders can be an active part in policy making, communicating and influencing other sectors and groups (e.g. professionals) in an exchange that would benefit to all parties involved and to society in general as it fills the gap between discussions and implementation.

Mr Seychell announced as well that a first batch of proposals to be taken forward will be approved on the next physical meeting of the Health Policy Platform on the 15th November, so it is very important to bring your contribution on the platform already before this date.

Pain Alliance and European Pain Federation EFIC are responsible together for the administration of the discussion group on the societal impact of pain.

Here below we bring you some information on what the  EU Health Policy Platform is, what is the position of Expert Groups and how you can contribute to conveying the message on the importance of meeting the challenges raised by pain patients, to the decision makers.

EU Health Policy Platform Objectives

The EU Health Policy Platform aims to:
• Provide a framework for a dialogue between the Commission and stakeholders;
• Facilitate targeted discussions between the Commission services and stakeholders;
• Ensure transparency in the health policy dialogue;
• Contribute to building knowledge and expertise on public health issues;
• Support dissemination of information on DG SANTE projects (i.e. co-funded Health Programme projects, including Joint Actions);
• Identify, share and encourage replication of good practices related to health policy;
• Gather and circulate research outcomes and ease the availability of results and outcomes to interested stakeholders;
• Provide information on other policy areas related to health following the “Health in All Policies” approach.

EU Health Policy Platform Structure

EU Health Policy Platform operates through the following two axes:
• Web Platform – to enable online discussion and collaboration;
• Face-to-face meetings – to host targeted thematic discussions.
EU Health Policy Web Platform

The Web Platform

The Web Platform is a collaborative tool to ease the communication between
the Commission services and health stakeholders. It is aimed to be inclusive
and to reflect geographical and sectors’ diversity of the participants. The
working language is English.

Registration

To register on the EU Health Policy Web Platform, users have to create an
account in the European Commission Authentication System (ECAS). To
create this account, please click here.

To ensure transparency, usernames on the EU Health Policy Platform are
created automatically including the name of the person and the organisation for
which the user works. Multiple individuals from a particular organisation may
take part in the Web Platform. This enables the organisation to be present in
whichever networks they choose to join with various representatives.
Following the application, DG SANTE moderators verify compliance of the
applicants according to the criteria, and grant access to the Web Platform.

Structure of the Web Platform

The Web Platform consists of a public webpage and three sections:

  1. The public webpage, containing general information on the EU Health
    Policy Platform – allows the public at large to access information made
    available.
  2. The Agora network is an open discussion area accessible to all
    stakeholders who registered in the Web Platform.
  3. Thematic Networks are networks accessible to stakeholders to facilitate
    their drafting of joint statements on chosen health issues
  4. EU Expert and Stakeholder Groups network(s)

EU Expert and Stakeholder Groups network(s) are networks only accessible for members of existing DG SANTE’s EU Experts and Stakeholder groups. The Platform will assist them to prepare their meetings, benefit from interaction with other groups and provide a means of continued discussion between their meetings.

You are encouraged to bring to this platform as many stakeholders as possible and to be active on the platform starting from today in order to support our mission, making the chronic pain patients’ voice heard.

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BMP Grant

PAE News

Brain, Mind, and Pain Patient-Centred Innovation Grant

 

Pain Alliance Europe has started a biennial patient-driven innovation grant in collaboration with Grünenthal Group and with the support of partner organisations European Pain Federation (EFIC), European Federation of Neurological Associations (EFNA) and Europan Academy of Neurology (EAN).  This grant will offer researchers funding to run a project where patients are fully involved in the initiative.  It will create a sense of innovation with direct impact on patients’ needs and will create awareness of pain conditions.

The grant will be to fund a project on chronic pain conditions and neurological disorders and the main streams of the project are:

  • Access to innovative treatments
  • Prevention and self-management approaches
  • Reduction of stigma and research into improvements in the quality of life.

The 2018 edition of the Grant will focus on the first of the main streams: Overcoming problems in access to treatments.

The application requirements will be published on the BMP website by the 15th August. You are invited to consult the website regularly and/or to subscribe to the BMP Grant News Flash in order to stay updated with the latest developments.

To ensure that the submitted projects fully involve patients, a representation by or an association with patient organisation(s) is recommended.

A steering committee is working on the conditions and criteria for selecting members of the jury, which will include patients’ representatives led by Pain Alliance Europe, and will be responsible for choosing winning candidate for the Brain Mind, and Pain Patient-Centred Innovation Grant.

You can find more details about the content of this project and the procedures for participation in the BMP Grant application process on the website www.bmp-grant.eu

   

 

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The Value of Treatment

PAE News
Brain Mind and Pian Interest Group meeting – European Parliament

 

On the 12th of July,  Pain Alliance Europe members and representatives have been present at the meeting of the  MEP Interest Group on Brain Mind and Pain, in an action developed together with the Interest Group on Mental Health, Well-being, and Brain Disorders and in partnership with the European Brain Council.

The meeting was hosted by MEP Jana Žitňanská, MEP Michal Boni, and  MEP Marek Plura. MEP Nessa Childers and MEP Brian Hayes have been present to show their support for the event and had timely contributions to the discussions.

Paul Arteel, from GAMIAN-Europe chaired the first part of the meeting addressing the conclusions and recommendations from the European Brain Council’s Value of Treatment research project and White Paper.

Prof. Patrice Boyer and MEP Michal Boni opened the meeting and introduced the panelists who presented case-studies in four disorders, presented from various stakeholder perspectives, to support the idea and value of early intervention and to discuss how EU will support the identified solutions.

The case-studies presented dealt with:

 

STROKE

An epidemiologist and neurologist’s perspective – Dr Alistair Webb, UK  

 

 

MULTIPLE SCLEROSIS

A public health and policy perspective – Ms. Vinciane Quoidbach, Belgium

 

 

 

RESTLESS LEGS SYNDROME

A patient’s perspective – Ms. Joke Jaarsma, Netherlands

 

 

 

 

SCHIZOPHRENIA

Families’ perspectives – Ms. Aagje Ieven, Belgium

 

 

The second part of the meeting explored possible next steps in the Value of Treatment project – the application of the developed methodology to other disease areas e.g. rare diseases or chronic pain, as well as a future focus on interventions such as rehabilitation.

 

Mr Frédéric Destrebecq, Executive Director, European Brain Council opened the discussions, then the following unmet needs have been discussed:

 

 

 

RARE DISEASES (ATAXIA)

A neurologist’s perspective – Prof. Paola Giunti, UK

 

 

 

 

MYALGIC ENCEPHALOMYELITIS

A patient’s perspective – Ms. Nancy van Hoylandt, Belgium

 

 

 

CHRONIC PAIN

An academic perspective – Dr Nick Guldemond, PAE & University of Rotterdam, Netherlands

 

 

 

 

The guest speaker Stéphane Hogan, Head of Neuroscience in DG Research shared insights of his department related to research in the domain of neurology and in health in general.

 

 

The discussions at the end of the meeting raised questions about other categories of diseases not included in the project as well as questions raising the awareness of the present MEPs on the subject.

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Survey 2017 Pain Alliance Europe

PAE News
European Survey on Chronic Pain
Report of the 2017 Edition

Pain Alliance Europe involved its members and its members’ members, the patients, in an important project designed to provide information about the challenges of access to treatment that chronic pain patients meet.

Patients from 17 countries provided information via a European survey translated in the respective national languages and available online as well as in printed format.

The results of the survey have been processed by Dr Nick Guldemond and Ms Mathilde Strating of the University of Rotterdam, in a collaboration that will continue for future surveys.

Dr Guldemond and Ms Strating provided a comprehensive report.  Pain Alliance Europe presented this to its members during the General Assembly – and also to the public during the Societal Impact of Pain Symposium, where a poster showing this report was displayed to the delegates.

A full report slide was created for the SIP event highlighting the four main issues that the results of the survey have brought into attention:

  • Long time to get a diagnosis – 70% of the respondents reported that it took more than 1 year to get a diagnosis
  • Treatment satisfaction – 78% of the respondents were not satisfied with the efficiency of the treatment they received
  • The importance of support groups – 32% respondents who attended group meetings found these really helpful.
  • The importance of online patient associations’ forums – 57.4 % of the respondents who found the question relevant reported that participating in a patient’s association forum on the web was really helpful.

You can download the report’s brochure

The national surveys’ results were shared with all our PAE members.  They can analyse their national data and use it locally, to raise awareness at the national level on the hurdles in the access to treatment that patients with chronic pain conditions need to overcome.

PAE Board member Marian Nicholson, in charge of this project, said: “We had to overcome various challenges in creating this first survey on chronic pain. These included differences between national healthcare systems and procedures and of course language compatibility and comprehension.  We have had a lot of valuable feedback from the patients and learned a lot so that the next survey will be even better. In 2018, our project will continue with a survey on the impact of chronic pain at work. The aging workforce, a later age of retirement and the increasing prevalence of chronic diseases are some of the parameters that challenge the society nowadays. The survey will enable Pain Alliance Europe to provide patients’ insights on the importance of a healthy workforce and the related difficulties that must be addressed.”

 

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EFIC European Pain Congress 2017

PAE News
PAE represents the patients in EFIC’s Congress

 

The 10th Congress of the European Pain Federation, EFIC® (EFIC 2017) will shine a spotlight on current trends and future developments in pain medicine. European Pain Federation, EFIC® has long been known as the European leader in the field of pain, and its European congresses harness the expertise and experience of 37 national Pain Chapters, representing more than 20,000 healthcare professionals.

The 10th Congress of the European Pain Federation, EFIC® 2017 will take place in Denmark’s capital and biggest metropolitan- Copenhagen, from 6-9 September 2017, and the scientific programme will provide delegates with unmatched access to the latest knowledge and research of the world’s leading pain experts through its fascinating sessions and practical courses.

At the invitation of the organisers, two members of the PAE Board, Viorica Cursaru and Liisa Jutila will participate in the Congress’ works and events.

This invitation means a lot for Pain Alliance Europe, as, besides the networking opportunities that such an event brings, and the possibility to stay up to date on current trends and research on pain medicine, we are given the occasion to represent the patients in an important event of the health care practitioners, international physicians, and scientists. 

As a part of the EFIC Key Session “Societal Impact of Pain: Classification of chronic pain as a condition” chaired by Thomas Tolle (Scientific Programme Committee Chair) – Liisa Jutila is going to present the patient’s perspective on how the new changes in ICD 11 – the classification of chronic pain as a condition means for the patients and how could this change improve the situation for patients.

Other key speakers are present in this sessions to complete the views on the ICD 11 change. After an introduction from Bart Morlion, Rolf Detlef-Treede will present the IASP position on the matter, a representative of the EU Parliament will expose on What the classification of chronic pain could mean for pain care policy in Europe and Robert Jakob, representative of the World Health Organisation will present the official position of his organisation.

To find more info or register for the Congress, please visit EFIC’s Congress website. Alternatively, you can download the invitation to the event.

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General Assembly PAE

PAE News
Pain Alliance Europe’s General Assembly

 

Pain Alliance Europe’s 2017 General Assembly took place on the 9th June, at the Grand Hotel Excelsior, Malta.

23 representatives of PAE member organisations attended and shared their interest in contributing to the association’s next actions and in being informed about the details of the ongoing projects.

PAE President Joop Van Griensven presented an overview of the activities of the past year, highlighting the main points and the possibilities of improvement. 2016’s financial report was presented by Viorica Cursaru.

The activities for 2018 were outlined and a corresponding budget was presented and approved in unanimity by the delegates present.

This General Assembly decided upon the level of the membership fee introduced according to the statutes of the organisation, but which had been established to zero level thus far. The Board asked the GA to establish a minimum level of the membership fee.  Reasons for a fee included the credibility of the organisation in the eyes of its peers and partners, also in order to diversify our revenue sources and to assure a minimum of sustainability of the association with the support of its members.  The delegates voted to agree to a membership fee and the established level of contribution, with one abstention.

The assembly discussed the current projects: BMP Grant and the PAE Survey on chronic pain.

The Red Balloon project had held its final event on 7th July and some of the members had taken part. Joop Van Griensven announced a follow-up on the project and asked members to endorse and support it.

The delegates then asked questions about the Expert group platform on the Societal Impact on Pain, which has been announced as a new project where their involvement is required.  The Board explained that procedures for the administration of the platform – which Pain Alliance Europe shares responsibility for with EFIC – are currently being created and by the end of the summer PAE will be sending out communication with details and instructions.

Yanina Flossbach, medical director at Novartis presented a new clinical study on their new treatment for neuropathic pain which is expected not to provoke side effects such as dizziness and sleepiness. PAE members were invited to support this project if applicable to their organisation.

The meeting was followed by a networking dinner where the delegates could share insights on the event in Malta and their organisations’ projects.

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