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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WHO seeks to limit access to pain treatments

PAE News

Tramadol and gabapentin on EDDC list of drugs that could be restricted: deadline for comments end October.

Every year a meeting of the ECDD is organized by WHO to evaluate the dependence-producing properties and harm to health of psychoactive substances, including the ones with medical use. Recommendations from the ECDD on whether or not these substances should be placed under international control are made to the Secretary-General of the United Nations, and are subject to a vote by the United Nations Commission on Narcotic Drugs (CND).

This year, the Thirty-ninth meeting of the Expert Committee on Drug Dependence (ECDD) will be held in Geneva, Switzerland, 6 – 10 November 2017.

This evaluation may result in limited access to pain treatments.  The WHO is concerned that these drugs are manufactured illegally and used inappropriately in many countries. Misuse of psychoactive drugs occurs in many countries.

Tramadol and gabapentin are on the list of drugs that could be restricted. Consult the full list here.

PAE has sent a statement to the ECDD asking for the medication to be kept available for patients.

“Patients’ improvement of the quality of life, his safety and his possibility of participating in society should be the only criteria which authorities should take into consideration.” – said Joop Van Griensven, PAE President, in the letter addressed to ECDD.

We invite you, as a PAE member, to support this statement and react on behalf of your organisation, explaining why restricting patients’ access to drugs will not prevent their illegitimate manufacture and use in unregulated countries.

You need to send any statement by email to the ECDD Secretariat:   ecddsecretariat@who.int  by the end of October.

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“Patients Rights Have No Borders” Campaign

Member News

ADDCA & ACN

 

To celebrate the 10th Anniversary of the European Patients’ Rights Day, Active Citizenship Network started a widespread campaign in 2016 in cooperation with some of the national patient associations involved in its network.

In Portugal, the campaign is carried out by Associação de Doentes de Dor Crónica dos Açores / Chronic Pain Patients Association of Azores.

 

About the Campaign

Framework
Patients want to access cross-border health services when treatment is not available in their home country when it is managed better elsewhere, or, as in the case of many border areas, when the nearest available care is in another Member State. Currently, cross-border healthcare accounts for approximately 1% of the overall EU public health spending – around €10 billion per year.

Objectives
The main aims of the communication campaign are:

  • To improve the awareness of citizens and patients about their rights to go abroad for care.
  • To build a network of patient/healthcare users’ organizations all around Europe, able to provide information and collect data on cross-border healthcare. Indeed, thanks to the identification of referent associations in each EU Member State, patients could contact a local patient/civic organization in case of need for advice or support during their stay abroad.
  • To enable patient/healthcare users’ organizations, to easily contact their counterpart in another country to get specific information on the local healthcare system – with a focus on the implementation of patients’ rights – to help citizens.
  • To contribute to collecting data about this issue
  • To get in touch with National Contact Points and institutions accountable for cross-border healthcare management.

Campaign description by: Cittadinnanzativa (ACN)

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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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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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100 Cities against Pain 2017

Member news

ISAL Foundation

 

On Saturday 7th October 2017, Fondazione ISAL organized the ninth edition of the Day “100 cities against pain”. The event was supported by the major political and scientific institutions and has received the Medal of the President of the Italian Republic for its public value. As on previous years, PAE, MEPs, and EFIC have given their support to the initiative.

ISAL 100 Cities agains Pain 2017

The aim of “100 cities against pain” is to provide citizens with free consultations and with information concerning their therapeutic options and the locality of the centers for the treatment of chronic pain and to sensitize society, the media, and institutions regarding the problem of chronic pain and of its treatment.

On Saturday 7th October, and during the previous and following weeks, in more than 130 cities in Italy and abroad (Malta, Spain, Ireland, Azores), pain physicians, volunteers, and patients’ associations were in the main squares and hospitals to state the right not to suffer.

In Italy, more than 13 million people suffer from chronic pain but as a survey of Fondazione ISAL reveals, only 26% of them know that there are specialized treatment centers for chronic pain. At the same time, the majority of people consider chronic pain as a real disease.

This Day has been supported also by an online campaign on social media, #zeropain17 which has collected hundreds of pictures of people saying No! to pain.

100 Cities Against Pain 2017 PAE Endorsement from PAE President, Mr. Joop Van Griensvenon Vimeo.

 

 

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In Route of Pain – from Europe to Ponta Delgada

Member News

ADDCA

Next 28 October, the Chronic Pain Patients Association of Azores, ADDCA, celebrates his 12th anniversary with a scientific event (In Route of Pain – from Europe to Ponta Delgada), where we wait for the presence of patients, professionals, public and media.

This symposium is supported by the Portuguese Chapter of EFIC, Associação Portuguesa para o Estudo da Dor, APED and by the Portuguese MEP, Sofia Ribeiro, member of the MEPs’ Interest Group “European Patients’ Rights and Cross-border Healthcare”.

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Pain and Family

Member News

ADDCA

In September ADDCA went on with the conferences to members and public, with twenty-five attendances. We publicized this topic with an article in a local newspaper.  The nurse, Sandra Silva, dedicated studies about the Caregivers of patients with Chronic Diseases, particularly Chronic Pain:

 «About 25% of patients feel that Chronic Pain leads to the destruction of relationships with family and friends. Family members of the chronically ill should be informed about their active role as caregivers, learning how to manage interpersonal and family relationships.

 It is usually the families who look after their elderly, especially their closest relatives, mostly wives, daughters, daughters-in-law. Thus, they accumulate work and stress when fulfilling the tasks related to care, like being a parent, a partner and having as well a professional life, so that often they themselves feel physically and mentally debilitated; they manifest feelings of frustration, anxiety, restlessness and a constant worry, symptoms that lead to social isolation if there is no prevention and attention to these problems.

 

This reality is unquestionable, and today the family is the main source of support for the dependent elderly, in the sense of maintaining the person in their own home. It is the family member who supports the needs of the elderly in cases of illness at home.

 The elderly person himself waits for pain as his age progresses, avoiding to verbalize it so as not to be hospitalized, to perform complementary diagnostic tests, painful treatments and to avoid loss of independence, becoming itself an obstacle to the correct evaluation and treatment of pain. However, because there is still a social conviction that older people are less sensitive to pain, most people view it as a normal fact for their age, which causes chronic pain to be under-reported and not effectively treated. It is usually a severe pain caused by the progression of the disease, the consequences of therapeutic interventions, such as radiotherapy, or psychological reactions, which makes its treatment difficult due to the complexity of multiple intervening factors»

The fight against the pain in the elderly is a multidisciplinary task. It needs a partnership between the elderly/family, primary health care, hospital care, social institutions. It should be oriented towards prevention, based on strategies that facilitate care and caring for the elderly at home, not forgetting that the feelings and reality that families experience when caring for their elderly relative with chronic pain at home, as well as the quality of life depends greatly on the relief of pain.

 

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Exclusive support groups for CRPS

Member News

Thera Wanka

The new French PAE member, Association Thera Wanka, announces among its activities an interesting initiative aimed to improve the condition of CRPS patients: the implementation of the first exclusive support groups for CRPS (algodystrophy, algoneurodystrophy ) patients.

“We have noticed that CRPS patients are often taken for granted. Thanks to this group, the patients can be listened to, they can express themselves without any judgment” says Corine Cliquet, president of the association Thera Wanka.

These support groups are set up every 3rd week and are animated by the psychologist Céline Serres and Corine Cliquet – nurse and psycho-practitioner in EFT and NLP, also president of the association.

More information on the Association Thera Wanka’s  website.

 

 

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