Chronic pain: making the invisible visible. European collection of good practices

EU conference
"Chronic pain: making the invisible visible. European collection of good practices"

October 2nd, 2014

Venue: European Economic and Social Committee (EESC) – Room TTRE 7701 - 7th floor,
Trèves Bulding, 74, rue de Trèves, 1040 Brussels

During the Italian EU Semester of Presidency (July-December 2014), the conference represents an important occasion due to the political framework: this year, for the first time at European level, the issue of chronic pain is being put on the agenda by the EU institutions, also thanks to the active work of a number of patient and civic associations all over Europe.

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EU civic research: collection of good practices on chronic pain

Foreword

On 11 January 2014, the Italian Council of Ministers adopted a document laying out the preliminary plans of the Italian Presidency of the Council of the European Union indicating pain therapy and palliative care as areas of focus during the Italian Presidency.

Cittadinanzattiva Onlus and its European branch Active Citizenship Network (ACN), being deeply involved in the European and national debate on patients' rights against unnecessary and useless pain, welcomes the Italian Presidency intention to tackle the issue of pain therapy and palliative care and would be delighted to contribute to the agenda and content setting with this regard.

Putting pain therapy and palliative care on its agenda will allow the Italian Presidency to position Italy as a pioneer in this field and share its own experience with other member states (especially with regard to the best practice law 38/2010 on palliative care and pain therapy). It will, above all, promote a greater awareness of the issue of chronic pain therapy among EU and national policy and decision-makers and over the longer term, reduce the negative impact of chronic pain on EU society. This would not only ensure a lasting legacy of the Italian Presidency but also pave the way to a better future for patients in Europe suffering from chronic pain. Based on an observation of activities undertaken by previous Presidencies in the area of health, the initiative outlined below (solely or combined with an integrated approach) could be considered by the Italian Presidency and stakeholder in order to promote the debate on palliative care and pain therapy during its term. 

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European Patients’ Rights Days, What has been done

I. Introduction:
In 2002, Active Citizenship Network (ACN) together with a group of European citizens organizations established a European Charter of Patients’ Rights, which includes the following 14 rights:the right to preventive measures; access care; information; consent; free choice; privacy and confidentiality; respect of patients’ time; observance of quality standards; safety; innovation; avoidance of unnecessary suffering and pain; personalized treatment; to complain; to receive compensation. All these rights, based on the Charter of Fundamental Rights of the European Union, are crucial in matter of European citizens and healthcare services. The majority of these rights are also embodied within the Council conclusions on Common values and  principles in EU Health Systems adopted in June 2006.

The reinforcement of these rights will become effective only with the cooperation and commitment of all healthcare stakeholders in every EU country. It is thus essential to increase awareness regarding the importance of patients’ rights and everyone’s responsibilities in guaranteeing their respect. We believe that celebrating a European Patients’ Rights Day every year in all the EU Member States would greatly contribute to this goal. It is a common occasion to inform, discuss and take commitments to improve patients’ rights in Europe and in each member state.

For this reason ACN, together with citizens’ and patients’ organizations throughout Europe, have taken the initiative to organize for the last six consecutive years the European Patients’ Rights Day.

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Best practices on Chronic Patients and Organizations’ empowerment

Active Citizenship Network (ACN) has decided to gather and share during the 8th celebration of the European Patients' Rights Day 2014 (dedicated to: "The role of citizens' organisations in the empowerment of patients with chronic diseases") the following best practices (BP) of different citizens and patients' organisations, coming from a wide range of EU countries on:

• empowerment of individual patients: information, support and capacity-building of individual patients with chronic diseases, as well as their relatives, who usually play an essential role in helping them to deal with their conditions, including their social, psychological, and other impacts. This includes partnerships between patients' organisations and other stakeholders, i.e. health professionals, public institutions, media, healthcare industry, etc.

• empowerment of patients' organisations by the creation of national or European networks, which transfer to them competences and tools, help them create partnerships, identify common objectives, etc., so as to have an effective impact on the health policy-making.

The BP come from 17 different Countries (Belgium; Bulgaria; Cyprus; Finland; France; Germany; Georgia; Italy; Latvia; Macedonia; Malta: Netherlands; Portugal, Romania; Spain; Switzerland; United Kingdom) and the sources are:
• experiences brought by the members of the Associations involved in the ACN Network and in the Organization involved in the Conference of the 8th European Patients' Rights Day 2014.
• some of the 40 BP "active involvement of active ageing citizens in the health policy" collected in the framework of 6th EPRD (2012) (www.activecitizenship.net/files/take_action/active_ageing_eu_policy.pdf).

17 of 28 BPs concern the empowerment of individual patients, 3 of 28 concern the empowerment of patients' organisations, 8 of 28 relate to both the aspects analyzed.

The kind of subjects involved in the BPs are, of course, civic organizations but most of them includes the participation/promotion by public institutions, universities, health insurance, international networks, university hospitals, scientific societies, foundations, industries etc.

Download the Report

For further information please write to This email address is being protected from spambots. You need JavaScript enabled to view it.

With the support of:

The European Union,
in the framework of the Health Programme (2008-2013)

 
European Economic and Social Committee

The European Patients' Rights Day 2014 has been made possible also thanks to an unrestricted educational grant from:

Directive 24/11: the information from the EU Commission

The EU Commission produced a short video to inform patients about their rights, and to advise them on things they should consider before going abroad for treatment. You can also find a leaflet, the principal Questions&Answers on the Directive and the list of the National Contact Point.

For your convenience, we have provided a letter to request the informative leaflet 'To know before you go'. Complete it and send it directly to: This email address is being protected from spambots. You need JavaScript enabled to view it.">This email address is being protected from spambots. You need JavaScript enabled to view it.

Directive 24/11: what the Associations recommend to the EU Institution

At European level, Active Citizenship Network addresses the EU Institutions so that they become facilitators and guarantors in:

• building a network of National Contact Points;

• begin a proper dialogue between the National Contact Points and the various stakeholders identified by the Directive as necessary interlocutors and at the same time striving to involve associations for patients and for the protection of rights;

• promote opportunities for discussion and debate on the subject, for example within the EUHPF in order to disseminate awareness and maintain high attention to the important changes introduced by the Directive;

• monitor the problems citizens may encounter while dealing with cross-border healthcare;

• ensure that the development of e-health, urged by the Directive, may be safely carried out and without exposing the Member States to the risks of scams and frauds;

• convey a European-oriented message built upon these new rights and provisions in healthcare which would help strengthen the sense of belonging to the European community.

(written in October 2013)

Directive 24/11: Public events all around Europe organized by ACN partners

To discuss with the national Institutions, inform the public opinion and to compare their experience with the ones coming from other Countries, civic and patients Associations linked to Active Citizenship Network have promoted public events. In particular:

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The patient involvement in the Directive 24/11 transposition: a first assessment

A brief summary of the information produced by associations clearly shows that the behaviour of the various Member States, compared with the involvement of citizens and patients' organizations can be classified into three types:

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Develop EU Pain Patient Pathways Recommendations

The Patients'Forum organized by Active Citizenship Network and Pain Alliance Europe last 22-23 October, 2013 it was the occasion to develop concrete proposals for the improvement of pain management in Europe: recommendations against pain, according to the patients point of view, for a good Health policy on chronic pain relief. With the Patients' Forum it started the II step of the project "Pain patients' pathway recommendations". 

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Make them informed! A campaign for the implementation of the Right of European Patients to make an informed choice

The 7th European Patients' Rights Day, realized by Active Citizenship Network in Brussels in May 2013, has been an occasion for all of us, representatives of national patient organizations, European platforms, EU and national institutions, representatives of healthcare providers etc. to share our experiences on the directive 2011/24/EU on cross border care and on patients' involvement in health policies on a multi-stakeholder basis.

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