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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Red Balloon – assessment time

PAE News

The Red Balloon – closing of the project

Joop Van Griensven, the president of PAE, and a chronic pain sufferer himself had this to say about the launch of the Red Balloon Project in 2016: “Chronic pain patients are not visible within European society although it is the most prevalent health condition. It is also the most common reason why people are visiting their GP and yet it is not well known by health care professionals, the policymakers, the politicians and the General Public. This lack of awareness is astonishing given that almost everyone has some kind of contact with it – whether they suffer from chronic pain, know someone with chronic pain, care for someone with chronic pain or work with someone with chronic pain. With this project we would like to increase public awareness around chronic pain and its management and try to get them involved in changing the situation for the better.”

Following its goal “to Improve pain management across Europe”, The Red Balloon Campaign was launched at the Annual “Societal Impact of Pain” (SIP) symposium, entitled “SIP 2016: Time For Action!”. Pain Alliance Europe has developed this project in collaboration with Boston Scientific.

The campaign’s powerful symbol was the red balloon being filled with pain and then released. The participants have taken pictures with a red balloon, either releasing it or bursting it to #releasethepain.

The mission of the project was to raise awareness around chronic pain, the people affected and its impact on the global community, to engage people around the issue, activating conversation, understanding, and outreaching but also to trigger change via meetings and events in the EU Parliament.  It delivers a powerful message to policy makers and healthcare providers that a change needs to occur to provide better pain management to patients across Europe.

The power of social media was leveraged as a tool to bring the European community together for the cause. One year after, the project has the following accomplishments to report:

  • 6.5M people reached
  • 2300 Balloon released
  • 6300 website visitors

The event closing the project has taken place in Malta during the SIP Symposium, the participants were invited to burst out red balloons and to share their insights related to chronic pain in powerful short messages left on a red balloon wall.

 

 

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World Brain Day

PAE News

World Federation of Neurology

 

World Brain Day 2017 The World Federation of Neurology was established on July 22, 1957. It was suggested by the Public Awareness and Advocacy Committee that 22 July 2014 should be celebrated as “World Brain Day”. This proposal was received with a warm welcome by delegates and became an annual activity.

The main objective of this day of the brain is to increase public awareness and promote advocacy related to brain health.

The topic for World Brain Day is 2017 is “Stroke is a brain attack – prevent it and treat it”

What national associations can do to get involved:

  1. Arrange press conference, media briefing sessions etc. involving local media
  2. Seminars, conferences, public awareness sessions
  3. Presentations at local schools, colleges, universities
  4. Poster, essay, drawing competitions
  5. Collaborate with other organizations (Brain council, neuroscience societies, neurosurgery and psychiatry organizations, stroke and epilepsy society etc.)
  6. Newspaper, magazine articles

Media materials can be downloaded here to help you promote your events related to World Brain Day.

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