Where we come from EFIC 2001, Human Rights Watch 2009, IASP 2010, SIP 2010/2011 Where we are

1. “THE SOCIETAL IMPACT OF PAIN – A ROAD MAP FOR ACTION Rolf-Detlef Treede, Chair of Neurophysiology, CBTM, Medical Faculty Mannheim, Heidelberg University • Where we come from • EFIC 2001, Human Rights Watch 2009, IASP 2010, SIP 2010/2011 • Where we are • Roadmap Monitor 2011/2012 • Where we want to go • The Societal Impact of Pain – A Road Map For Action

2. EFIC Declaration on Pain 2001 In 2001, the European Federation of the International Association for the Study of Pain Chapters (EFIC) published its Declaration on Pain: “Chronic Pain as a Major Healthcare Problem, a Disease in its Own Right”. The Declaration called on national governments and the EU Institutions to increase the level of awareness of the societal impact of pain.

3. Access to Pain Treatment as a Human Right • 2009 • “Please, do not make us suffer any more…” • Recommendations • The pain treatment gap is an international human rights crisis that needs to be addressed urgently both at the international and national level. Therefore, Human Rights Watch makes the following recommendations to governments around the world: • General • • Establish, where this has not yet been done, a working group on palliative care and pain management … • Ensuring an Effective Supply System • • Submit, in a timely fashion, realistic estimates for the need of controlled medications to the INCB… • Ensuring Instruction for Healthcare Workers • • Ensure adequate instruction for healthcare workers, including doctors, nurses, and pharmacists, at both undergraduate and postgraduate level… Human Rights Watch: http://www.hrw.org/en/node/81080/

4. Declaration of Montreal 2010 • Declaration that Access to Pain Management is a Fundamental Human Right • In order to assure these rights, we recognize the following obligations: • The obligation of governments and all health care institutions, …, to establish laws, policies, and systems that will help to promote, … , the access of people in pain to fully adequate pain management. Failure to establish such laws, policies, and systems is unethical and a breach of the human rights of people harmed as a result. • 2. The obligation of all health care professionals in a treatment relationship with a patient, …, to offer to a patient in pain the management that would be offered by a reasonably careful and competent health care professional in that field of practice. Failure to offer such management is a breach of the patient's human rights. http://www.iasp-pain.org/Content/NavigationMenu/InternationalPainSummit/DeclarationofMontr233al/default.htm

5. Where we come from • Ten years on from the EFIC Declaration on Pain, national and EU policy action has been very limited. At the same time, basic and clinical science have demonstrated the feasibility of pathways out of pain for many types of acute and chronic pain, but health care systems currently do not guarantee general access to these. • „Everybody seems to agree that pain has a tremendous negative impact on the individual life and on the human community at large, but this common sense does not lead to action. • It seems that each decision maker assumes all the other decision makers are already taking action to solve this important issue in the health care system. “ • To end this paradoxical state of inaction, • we need the initiative ‘Societal Impact of Pain’ by all European stakeholders.

6. In 2011 the symposium “Societal Impact of Pain” SIP 2011, took place in the European parliament. One of the most important outcomes was the Road Map for Action

7. The Societal Impact of Pain – A Road Map For Action • We call on European governments to: • Acknowledge that pain is an important factor limiting the quality of life and should be a top priority of the national health care system. • Activate patients, their family, relatives and care-givers through the availability of information and access to pain diagnosis and management. • 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. • Raise awareness of the importance of prevention, diagnosis and management of pain amongst all healthcare professionals, notably through further education. • 5. Strengthen pain research (basic science, clinical, epidemiological) as a priority in … research road maps at national … level, addressing the societal impact of pain and the burden of chronic pain on the health, social, and employment sectors.

8. The Societal Impact of Pain – A Road Map For Action We call on the EU Institutions to: 5. Strengthen pain research (basic science, clinical, epidemiological) as a priority in EU framework programme …, addressing the societal impact of pain and the burden of chronic pain on the health, social, and employment sectors. 6. Establish an 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.

9. The Societal Impact of Pain – The Roadmap Monitor • "THE SOCIETAL IMPACT OF PAIN - A ROAD MAP FOR ACTION“: • finalised at the symposium "THE SOCIETAL IMPACT OF PAlN“ • presented in plenary session 3 & 4 May 2011 in the EU Parliament. • concrete steps directed at National and EU governments to improve policy making regarding the societal impact of pain in Europe. • ROADMAP MONITOR • Three-page checklist issued by EFIC board to monitor implementation of the roadmap at the national level on a yearly basis. • Preliminary results were presented in Hamburg (21-24 September) at the 7th EFIC Congress. • These early findings offer a snapshot of how countries have addressed and implemented the “Road Map for Action” for improved pain care in Europe.

10. Key FindingsEuropean Road Map Monitor 2011

11. Large discrepancies between governments and the extent to which they recognise adequate pain care as a citizen’s right

12. Portugal, France and Belgium lead the way with their National Action Plans

13. High-level working groups on pain care are still not a high enough priority in most of Europe

14. “Pain is real” education programme evident in more than half of the nations featured in the study

15. Pain medicine and care is slowly being recognised in its own right as a mandatory teaching subject

16. European governments lack commitment to strengthen pain research

17. Ensuring patient access to pain care seen by majority as work-in-progress

18. Europe lacks a fully-fledged chronic pain care plan with focus on wait times and financing of early diagnosis and secondary prevention

19. Additional questions What are the major achievements in your country? What are the biggest/major problems you encounter(ed)?

20. What are the major achievements in your country? Education: • CZ: Pain care is a separate discipline with its own education. • DE: Pain medicine mandatory teaching in 19/34 medical schools (curriculum designed by national IASP chapter). Pain medicine as add-on training to all specialties with direct patient contact. Patient’s right to treatment: • DK: The patients' right to treatment within 30 days • IT: Legge del 15 marzo 2010 No. 38 National action plans against pain: • FR: Since 1996, three national action plans for pain. We expect the fourth plan. • PT: The National Program for Pain Control testifies to the intention of the health authorities to ensure the best practice in terms of pain treatment. • UK: England – Parliamentary questions on Pain raised. • UK: Northern Ireland – National Pain Summit is being organised • UK: Scotland and Wales have recognised Pain as a disease in it’s own right & now getting the finance to follow.

21. What are the biggest/major problems you encounter(ed)? Unclear responsibilities • DK: Patients end up between the regional responsibilities and the municipal responsibility. Chronic pain by many decision makers is not recognised a s disease of its own right. Insufficient financing • CZ: Insufficient financing. Number of pain specialists is insufficient. • UK: Lack of government funding. Apathy by Government as they don’t know how to measure pain effectively. Lack of training of professionals: • PT: The lack of pre and post-graduated training for the majority of doctors. • SW: There are also too few pain centres, which means that many patients do not meet a pain specialist. Missing epidemiological and health economic data • IE: NO real up to date data on pain in Ireland.

22. Where we are A “Road Map for Action” to address the societal impact of pain in the EU has been endorsed by 85 organisations and was signed at the Symposium “Societal Impact of Pain 2011”, 3-4 May 2011, Brussels National plans exist at government level: France, Italy, Portugal, Scotland, Wales Roadmap Monitor 2012 ongoing survey

23. Where we want to go • Roadmap Monitor 2012: • Fill in the gaps, cross-validate data, • Include all endorsing partner organisations • Publish current state, monitor progress • National level: • Identification of common problems • Exchange of best practice solutions • Implementation of National Action Plans Against Pain throughout Europe • Advocacy at EU level

24. Thank you for your attention.