Tackling the Stigma of Brain, Mind and Pain Disorders
Meeting of the Interest Group on Brain, Mind and Pain
In partnership with the Interest Group on Mental Health, Wellbeing and Brain Disorders
14 October 2015, European Parliament, Brussels
Among the speakers who honoured the participants with their presence, was proudly welcomed the meeting’s Keynote Address: Mr.Michael Hübel, Head of Unit ‘Programme Management and Diseases’, DG-Santé, European Commission.
Ann Little (President, EFNA) opened the meeting welcoming participants and underlining that stigma is at the top of the list of important issues for all those affected by brain, pain and mental health disorders. Stigma stems from ignorance and fear and has pervasive consequences in all areas of life. Stigma not only results in negative behaviour; it has many other consequences, for instance in the area of funding. Brain, pain and mental health conditions occur twice as much as cancer-related conditions, yet research on cancer and cancer organisations receive twice as much funding. There is a need for more awareness of these conditions, which will also help those affected to seek help earlier.
Ann Little then gave the floor to Marian Harkin MEP, who paid respect to GAMIAN-Europe President Pedro Montellano, who sadly passed away on 2 October. A one minute silences was observed.
Marian Harkin welcomed the two Interest Groups working together on this issue, and emphasized the grave influence of stigma persons affected by brain, pain and mental health conditions and their carers. There is a growing need for more awareness and clear information. Listening to those who suffer stigma and how it impacts on their lives is crucial in this respect, and the meeting provided the opportunity to do just that. Nessa Childers MEP agreed, and stated that it is hugely important to get stakeholders and the general public interested in these conditions, as more and better information will help reduce stigma. She considers it part of her duty as an MEP to host meetings of this kind.
Read here the full Brain, Mind and Pain Disorders Meeting Report (PDF).
A holistic approach to chronic pain management that involves all stakeholders: change is needed
Chronic pain affects a large proportion of the population, imposing significant individual distress and a considerable burden on society, yet treatment is not always instituted and/or adequate. Comprehensive multidisciplinary management based on the biopsychosocial model of pain has been shown to be clinically effective and cost-efficient, but is not widely available. A literature review of stakeholder groups revealed many reasons for this, [....]
Here you can read the abstract and full CMRO publication (external link).
European collection of good practices
Project duration: from June to December 2014
The booklet comprises a European collection of good practices of chronic pain management, as recognized by Active Citizenship Network. In particular, the research allows us to give continuity - expanding it with some specificity – to the investigation for good practices in the struggle against pain started by ACN - in co-operation with PAE - in 2012-2013.
The aims of the project are:
To keep attention focused on chronic pain as a health priority locally, nationally, and at the EU level;
To encourage the exchange of experiences between professionals and patients' associations;
To raise awareness among institutions about the need to identify chronic pain as a priority in health policies and programs at EU and national levels;
To create a body of evidence that can be used to support the expansion of programs tailored to the care and treatment of patients with chronic pain;
Raise awareness about the technological advances and their impact of the care and treatment of chronic pain – how the improvement of lives for those with chronic pain.
More information on the project you will find at the ACN Project Website.
Here you will find the complete ACN collection booklet.
EU Report Patient's Right to avoid unnecessary suffering & pain
The Partnership, concisting of PAE (Pain Alliance Europe), ACN (Active Citizenship Network) and Grünenthal held a civic survey with the goal to identify guidelines and recommendations against pain on national and European level, starting from patients' experiences. The civic survey is a first attempt in which a widespread coalition of patients and citizen organizations represents the point of view of patients in the European policies on pain. The first deals primarily with chronic pain and the right not to suffer, the second, more generally, with health policies and the protection of patients.
More information you can find on the PAE project website.
The political framework of the project is designed by PAE representing the patients’ voice in Europe, ACN will be responsible for the scientific design, methodology and contents. The pharmaceutical company Grünenthal will be responsible for financial and non-financial support.
Chronic Pain in Europe - 2014
Final Report Summary - PAIN-OUT (Improvement in postoperative pain outcome)
Post-operative pain is an inevitable consequence of surgery. Poorly managed post-operative pain causes suffering, increases costs of care and can lead to disabling chronic pain. Despite the availability of high-quality guidelines and advanced pain management techniques acute postoperative pain management is still far from being satisfactory. About 40% of patients worldwide report inadequate pain relief despite receiving treatment.
PAIN OUT is a comprehensive, concerted European effort to develop effective, evidence-based approaches to improve care of pain in patients after surgery. Launched in January 2009, with four-year funding from the European Union's (EU) 7th Framework Program, it integrates experience gained from a national initiative in Germany (QUIPS, a national acute pain database) and the expertise of world-leading, European-based groups dealing with benchmarking, health outcomes and health care utilization research. PAIN OUT has created a large, international Acute Pain Registry as a platform for research and quality improvement. A network of participating hospitals contributes data to the registry and receives web-based feedback and benchmarking of their quality of care, in return. In parallel, the registry allows analysis of the large data bank as well as additional prospective data collections by using the existing infrastructure and network of PAIN OUT hospitals.
The main objective of the PAIN OUT project was to develop and to validate a system for measurement and feedback of outcome quality and support of decision making. Therefore, a core data set to be collected in all participating sites was defined using a Delphi consenting process. Project implementation in the 11 national clinical consortium sites (NCCS) included translation of questionnaires according to the standard procedures of translation and back-translation and training of staff for data collection. Online web-based data input facilities are fully established. The central data base was established successfully and contains more than 35,000 patient cases by now. A web-based software system has been developed, allowing for internal and external benchmarking of patient outcome data and offering users continuous feedback and analyses of their quality of care. By evaluating their results, users are able to implement change management concepts and can provide their patients with better care.
The survey "The Painful Truth Survey: The State of Pain Management in Europe", shows that treatments are failing. This survey under more than 1,000 chronic pain sufferers across Europe, was sponsored by the Boston Scientific Corportation.
Results show that treatments across Europe are failing sufferers
The Boston Scientific Corporation (NYSE:BSX) sponsored a survey under more than 1,000 chronic pain sufferers across Europe. The survey called "The Painful Truth Survey: The State of Pain Management in Europe" was supported by three organizations; Action in Pain UK, the Spanish Pain Association (EFHRE Sine Dolore) and the German Pain League (Deutsche Schmerzliga). Key results of this survey are that millions of patients continue to suffer on a daily basis, even after trying several treatment options. More than a third of sufferers still struggle with daily tasts affecting their work, personal lives, relationships and the ability to care for their children.
In Europe, chronic pain is one of the most common conditions for which people seek medical attention. About a third of sufferers indicate their chronic pain has lowered their household income by about 31% (averaging €5,000 annually), chronic pain costs the European healthcare system €300 billion a year. An estimated 90% of this can be attributed to indirect costs such as lost productivity, social security and welfare payments.
The organizations involved with the Painful Truth Survey call for governments in Europe to develop national plans for chronic pain management that go beyond the traditional diagnosis and treatment routes. Another point of improvement is better access to innovative treatment options that may not only benefit patients, but also health economies through demonstrated cost effectiveness.
For more information on the opinions of the three supporting organizations on the results of this survey, please have a look into the official article.
Here you can find the full The Painful Truth Survey.
Check this new brochure to find out more about chronic pain and about Pain Alliance Europe (PAE), the European umbrella association which brings together 28 national chronic pain associations.
Chronic Diseases in the EU: The Prevalence and Health Cost Implications of Chronic Pain
December 2012. Following the first public presentation of the original systematic literature report on the "Reflection process on chronic diseases in the EU - The role of chronic pain" during SIP 2012, the scientific paper by R. M. Leadley et al. was now accepted and published by the Journal of Pain and Palliative Care Pharmacotherapy. Please follow the link to the journal's website.
EPPOSI White Paper on a Chronic Conditions Model - chronic pain included!
The independent, not‐for‐profit, partnership-based and multi‐stakeholder think tank EPPOSI just published a White Paper on “Building a Workable Model for the Holistic Management of Chronic Conditions in Europe”.
While EPPOSI has been endorsing the symposia SIP 2011 and SIP 2012, the SIP-Platform and SIP Endorsing Organisations have supported the development of the White Paper during the past two years, including the demand for the recognition of Chronic Pain “… as an essential part of European and national policy-making on chronic conditions and diseases and as a health state to be treated as a disease in its own right.”
Read the full EPPOSI CCM White Paper.
Representatives from Patient Group, Civic Organisation and Industry enter into new collaborative project to improve the management of chronic pain in the EU
Brussels / Rome / Aachen, 19 November 2012. Pain Alliance Europe (PAE) representing chronic pain patients in Europe, Active Citizenship Network (ACN) and Grünenthal have entered into an official partnership on the development of European Pain Patient Pathway Recommendations. The projects will run until December 2014 and aims to create a greater awareness of chronic pain and to promote European policy-making for improved management of chronic pain.
While the political framework of the project is designed by PAE representing the patients’ voice in Europe, ACN will be responsible for the scientific design, methodology and contents. The pharmaceutical company Grünenthal will be responsible for financial and non-financial support. More information is available on the ACN Project Website.
EU Parliament Resolution on non-communicable diseases
On 15 September 2011 the European Parliament announced their resolution on the European Union position and commitment in advance to the UN high-level meeting on the prevention and control of non-communicable diseases.
Among others, the EU Parliaments demands:
N. whereas the majority of NCDs have common symptoms, such as chronic pain and mental health problems, which directly affect sufferers and their quality of life and should be addressed by means of a common, horizontal approach, so that healthcare systems can tackle these diseases more cost-effectively;
Here you can find the full EU resolution on non-communicable diseases.
Tackling chronic pain in Europe on policy level
During the 2nd symposium on the "Societal Impact of Pain", which took place in the European Parliament in Brussels on 3-4 May 2011, a "Road Map for Action" was adopted and officially presented to Members of the European Parliament and the EU Commission.
The policy instrument lists seven concrete policy dimensions on how to tackle chronic pain in Europe. It is directed towards the EU institutions, as well as towards governments and decision-makers of EU Member States. More information you can find in the corresponding SIP symposium press release.
1. Acknowledgement of pain as an important factor limiting the quality of life; 2. Availability of information and access to pain diagnosis and management; 3. Increased awareness of the medical, financial and social impact that pain and its management have; 4. Increased awareness of the importance of prevention, diagnosis and management of pain; 5. Enforcement of pain research; 6. Establishment an EU platform for the exchange, comparison and benchmarking of best practices; 7. Trend monitoring in pain management by using the EU platform.
Here you can find the complete Road Map for Action.
"Epidemiology of chronic non-cancer pain in Europe"
In February 2011 the report "Epidemiology of chronic non-cancer pain in Europe: narrative review of prevalence, pain treatments and pain impact", written by Kim J. Reid et al, was published as a journal article in Current Medical Research and Opinion. The goal of the report was to obtain epidemiological data about chronic non-cancer pain. This data was obtained using systematic review principles in searching and summarizing results.
"Epidemiology of chronic non-malignant pain in Europe"
This report aimed to provide epidemiological information about chronic non-cancer pain in Europe using the most representative, recent, comprehensive and valid studies. Where there was an absence of data on chronic non-cancer pain, studies were used that may have included participants with chronic cancer-related pain.