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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Digitalisation of healthcare

Partner News

European Brain Council (EBC)

The 22nd November 2017 seems to be a busy day for health-related events in the EU Parliament in Brussels.

After the MEP Interest Group on Brain, Mind and Pain Meeting (8h30-10h30) discussing case-studies from across Europe on Ensuring equitable access to high-quality treatment in brain, mind and pain disorders, starting 13h00 European Brain Council (EBC) will hold an event focused on the digitalisation of healthcare.

Hosted by MEPs Mr.  Michał Boni and Mr. Carlos Zorrinho, the event will explore how digital technology for healthcare can benefit the brain, and how we can ensure that these benefits reach the people who need it most.

As digital technologies continue to develop at a rapid pace and the use of health data continues to widen, both are beginning to change both our lives and the organisation of healthcare, EBC would like to take a step forward and join the forerunners in the digital movement. We would like to join the leading voices in digital health, as we believe we offer the right arena to build consensus amongst many different stakeholders.

Speakers include: Prof. David Nutt (EBC), MEPs Michael Boni & Carlos Zorrinho, Magda Chlebus (EFPIA), Monika Benson (MyDystonia App), Kim Baden-Kristensen (Brain+) and representatives from the Estonian Presidency of the EU and mHealth start-ups (TBC)

Read more about the event here and follow the link below to register:

CLICK TO REGISTER NOW

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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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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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Brain Mind and Pain – Project Updates

PAE news

The Written Declaration and next actions

 

In recent months, the vice-chairs of the Brain, Mind and Pain European Parliament interest Group, together which some co-initiators, have been working hard on Written Declaration 0112/2016 on access to employment for those affected by neurological disorders and chronic pain conditions.

Presented on 24 October 2016, they had until January 24th to get the signatures of half +1 of their MEP colleagues (that’s 376). Our members and their members also reached out to the national MEPs which was a big help.  However, we didn’t have the wind at our backs.  At that time, the discussion in the European Parliament about written declarations in general reached its climax and they voted to stop all written declarations.

Despite the negative attitude of MEPs towards written declarations, we achieved 178 signatures on our written declaration.

We would like to thank all the MEPs who signed the written declaration and all of those who did their best to get the written declaration accepted.

For EFNA and PAE this disappointment is no reason to stop with their activities.  It will encourage them to put some extra efforts towards achieving positive results. This will start with the next BMP meeting, scheduled for March 8, where we will discuss the Social Pillar with MEPs and representatives from the Commission, as well as options for patients to influence them. PAE will have an active role in this as we are convinced that our members and their members will benefit from a well-developed Social Pillar.

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The Written Declaration 0112/2016

Aside

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

#makeworkworkThis 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 and a total of 141 MEPs who have already signed. However, we will need to encourage a minimum of 376 MEPs  to sign to show their support by 24 January in order to have it adopted!

A background briefing with more information on this initiative is available here.

Please download the following form and digitally sign to show your support. Returns must be made from Member’s own mailbox to WritDeclSign@europarl.europa.eu

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