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Pain Alliance Europe

New Alliance to lobby for 100 million Chronic Pain patients

Brussels, Belgium (November 29, 2011) – In the presence of several MEPs from major political parties, a representative from the Commission and the President of EFIC, the health pofessionals´ pan-European organisation on pain research, Pain Alliance Europe (PAE) was officially launched in the European Parliament. The aim of the new Patients´ Alliance – a network of 18 NGOs representing 11 European countries so far – is to raise awareness for people living under constant pain with neither adequate treatment nor the understanding of what this means to the life quality of the individual. Not to speak of the billions of Euro lost in working hours to the European economy each year.

Already one in every four Europeans is suffering from excruciating pain, 100 million alone in the 27 EU states with half of them not being treated or even taken seriously. Whereas rheumatic, orthopedic and cancer pains are recognized ailments with many groups lobbying for their recognition and proper treatment, chronic pain as a disease is virtually unknown to healthcare professionals and the general public at large.

“Pain relief is a human right, as recognized by the World Health Organisation (WHO) and Human Rights Watch, so EU member states should make effective management of chronic pain and access to treatments a public health priority”, demands Hans Georg Kress, President of EFIC, the European Federation of the international Association for the Study of Pain Chapters (www.efic.org) Working closely together with Gina Plunkett, Chairperson of Chronic Pain Ireland and acting President of PAE he welcomes the new alliance as “an important step towards our aim of public recognition of chronic pain not only as a true challenge to patients and physicians, but also to the healthcare systems, the politicians and strategic decision makers throughout Europe”.

Although typically, due to a bout of pain, Gina, a sufferer of chronic pain herself, could not attend the meeting it will be “of paramount importance” to call on European governments and EU Institutions to put a “Road Map for Action” on their policy agenda. Proposed activities are:

1. Acknowledge that pain is an important factor limiting the quality of life and should be a top priority of the national healthcare system
2. Activate patients, their families, relatives and caregivers through the availability of information and access to pain diagnosis and management.
3. Raise awareness of the medical, financial and social impact that pain and its management has on the patients, their family, care-givers, employers, and the healthcare system.
4. Raise awareness of the importance of prevention, diagnosis and management of pain amongst healthcare professionals, notably through further education.
5. Strengthen pain research (basic science, clinical, epidemiological) as a priority in EU framework programme and in equivalent research road maps at national and EU level, addressing the societal impact of pain and the burden of chronic pain on the health, social and employment sectors.
6. Establish a EU platform for the exchange, comparison and benchmarking of best practices between member states on pain management and its impact on society.
7. Use the EU platform to monitor trends in pain management, services and outcomes and provide guidelines to harmonize effective levels of pain management to improve the quality of life of European citizens.

Chronic pain poses enormous costs to society in direct costs of health and social care as well as costs that result from sufferers or their carers being unable to work. 21 % of Europeans with chronic pain are unable to work and of those who are, 61% said it had directly impacted their employment status. According to the Pain Proposal European Consensus Report chronic pain could be costing Europe as much as EUR 300 billion annually. Prevalence of the severe pain is highest in Norway, followed by Poland and Italy.

On the day of the launch the newly formed alliance elected a Board of Directors with Joop van Griesven (The Netherlands) as President and Gina (Ireland) as Vice President. The PAE office is installed at the Vlaamse Pijnliga, Haachtsesteenweg 579 PB 40, B-1031 Brussels.

Members of Pain Alliance Europe (PAE)

• ENFA The European Network of Fibromyalgia Associations aims to promote Fibromyalgia awareness to politicians, physicians, scientists and the general public on a European level.
  eMail: contact@enfa-europe.eu; treasurer@enfa-europe.eu
  www.enfa-europe.eu

Austria

• EURAG Austria – the national platform of EURAG Europe, the non-political and non-profit umbrella organisation for older persons in 34 countries, which holds an advisory position at the UN, the WHO and the EU. The aims of EURAG Austria are to obtain life quality and self-determination of older persons and to promote a bridge between generations.
  eMail: eurag@eurag.at
  www.eurag.at

Belgium

• The Vlaamse Pijnliga – The Flemish Pain League – a non-profit umbrella that brings together organisations concerned about pain.
  eMail: vlaamsepijnliga@cm.be

Finland

• Suomen Kipu Ry – The Finnish Pain Association is a non-profit organisation to act as an advocate for chronic pain patients by increasing the knowledge of pain and of its impact on everyday life in promoting research, treatment and rehabilitation."
  eMail: liisa.mikkonen@suomenkipu.fi
  www.suomenkipu.fi

France

• Association Francophone pour Vaincre les Douleurs (AFVD) – French Association in the fight against pain
  eMail: association-afvd@neuf.fr
  www.association-afvd.com

Germany

• Deutsche Schmerzliga, to increase the life quality of pain patients by improving the general framework of health care policies and by opening up therapeutic channels for patients suffering from chronic pain.
  eMail: Kletzko@schmerzliga.de
  www.schmerzliga.de

Ireland

• Chronic Pain Ireland to create a greater awareness of Chronic Pain and to provide relevant information and support for those living with the condition, for their families and friends.
  eMail: info@chronicpain.ie
  www.chronicpain.ie

Italy

• Active Citizenship Network, an EU network of 90 citizens organizations from 30 countries which aims to develop a European active citizenship and promote the participation of citizens in policy making especially in the health-care field.
  eMail: t.petrangolini@cittadinanzattiva.it
  www.activecitizenship.net

The Netherlands

• FES National Association For Fibromyalgia Patients "United Strong" to raise awareness for the causes and consequences of the rheumatic disease, Fibromyalgia, in society to be achieved through contacts with fellow-sufferers, information and guidance as well as promotion of interests.
  eMail: fes@fesinfo.nl , j.vgriensven@fesinfo.nl
  www.fesinfo.nl

• Pijn Platform Nederland (Dutch Pain Cooperation), a non-profit volunteer organisation to accomplish cooperation between patients´organisations in order to improve the treatment of pain-patients.
  eMail: info@pijnplatform.nl
  www.pijnplatform.nl

• HOOP – The Foundation Pain-Hope, an organization founded by people with chronic pain in order to support and inform people with chronic pain as well as workers in healthcare.
  eMail: p.roetering@hccnet.nl
  www.pijn-hoop.nl

Romania

• Myeloma Euronet Romania (MER), a non profit organization aimed at addressing the needs of the patients suffering from multiple myeloma (MM) . The objectives of MER include advocacy both at the national and European level, awareness raising and empowerment of the patients as well as providing MM patients with updated information regarding new treatments presently used in other EU countries.
  eMail: viorica@myeloma.ro
  www.myeloma-euronet.org

Spain

• Spanish Network for the Defence of Sufferers of Fibromyalgia, CFS & MCS.
  eMail: redefmsfcsgm@hotmail.com

United Kingdom

• ARMA – The Arthritis and Musculoskeletal Alliance, the umbrella association for the arthritis and musculoskeletal community in the UK to improve the lives of people with musculoskeletal disorders. This is achieved through partnership with its member organisations, by shaping policy and best practice.
  eMail: sarahrich@arma.uk.net
  www.arma.uk.net

• Backcare the only charity in the UK solely dedicated to providing support for, and campaigning on behalf of, people affected by back pain. It provides back health information to the whole community, both the lay person and health care professionals, and aims to reduce the impact of back pain on society.
  eMail: info@backcare.org.uk
  www.backcare.org.uk

• Pain Concern a U.K based charity that provides information and support for people living with pain and those who care for them and about them.
  eMail: info@painconcern.org.uk
  www.painconcern.org.uk

• Pelvic Pain a patient led organization aimed at providing support, information and advocacy for those with pelvic pain, their families and carers.
  eMail: info@pelvicpain.org.uk
  www.pelvicpain.org.uk

• The Trigeminal Neuralgia Association UK (TNA UK) is a support group for people suffering from this agonizingly painful neurological condition, which affects one or more of the three branches of the trigeminal nerve in the head and has been called “the worst pain known to man”.
  eMail: triciawking@hotmail.co.uk

Pain Alliance Europe (PAE) is kindly sponsored by Grünenthal, Medtronic, Pfizer.

Link

• See also: http://www.krankenpflege-journal.com/nursing-news/5228-can-you-feel-her-pain-qi-cant-go-to-work-now-because-sitting-down-is-worse-than-standing-upq.html 

Pain Alliance Europe (PAE) will be launched, 29.11.2011 (tB).