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The Mental Health Europe Bucharest Manifesto
“Beyond the bio-medical paradigm of DSM and ICD
diagnostic systems”
Pino Pini
Mental Health Europe
International Network Toward Alternatives and Recovery (INTAR)
Power to Communities:
Healing through social justice
University of Liverpool, United Kingdom
25th, 26th & 27° June 2014
Mental Health Europe (MHE)
A European non-governmental organisation committed to:
- the promotion of positive mental health and well-being
- the prevention of mental distress
- the improvement of care
- advocacy for social inclusion
- protection of human rights for people with mental health problems,
their families and carers
• Established in 1985 as the European branch of the World
Federation for Mental Health (WFMH) and is an
organisation in its own right since 1994
• Representing mental health in its broader sense:
No Health Without Mental Health!
• Official relations with WHO Regional Office for Europe
• Participatory status with the Council of Europe
• Liaison function for mental health promotion with the
European Commission
About Mental Health Europe
More than 85 member organisations
in 34 European countries
• Mental health promotion NGOs
• NGOs representing users of mental health services
• NGOs representing users’ families
• Other European NGOs in the mental health field
• Research and educational institutions
+ 60 individual members
MHE’s members
 Mental Health and Social Policy
 Mental Health and Human Rights
 MHE Thematic Committees
 European Projects
MHE’s areas of work
• Mental Health Europe (MHE), the leading independent, pan-European
mental health NGO, has for two years been calling for wider recognition
of the crisis of confidence in the increasingly biological/neurological
approach taken by Western psychiatry and for action to change the
culture and practice of mental health services to take better into account
the views, rights and lived experience of users of these services.
• MHE set up an expert Task Force to investigate, debate and report on the
development of DSM-5, its likely impact and on alternatives to the
wholly medical/biological approach to psychiatry which are effective and
which improve the lives and life chances of people with poor mental
health. Now after our first 18 months of work, we have set out a
manifesto for change.
The MHE Beyond the biomedical
paradigm Task Force
• At the conference “From stigma to inclusion- drivers of progress in the mental health field”
Bucharest, Romania, October 2013, the Task Force first presented the manifesto, which was
unanimously adopted by the meeting. It calls on organizations with power and influence in
the mental health field to take action which will move psychiatry and mental health
services towards more effective treatments and a greater respect for the human rights of
users.
• The manifesto (now translated into six languages) is composed of eight simple, achievable
points involving statutory bodies, such as the World Health Organization and the European
Union, political bodies, practitioners, medical insurance companies, service providers and
researchers, pharmaceutical companies and psychiatrists.
• None of the demands are new and our research tells us that they are supported by many
others in the field, but by bringing them all together for the first time, MHE hopes to spur a
debate which will change the way in which policy, research and practice in the mental
health field are conducted.
The MHE Beyond the biomedical
paradigm Task Force
-Task Force establishment, MHE board meeting, November 2012(1)
-MHE Position statement on DSM-5, February 2013 (2)
-Survey on the MHE position statement. March-April 2013 (3)
-Press release “More harm than good” concomitant with the DSM-5 publication, May 2013 (4)
-Task Force strategy, MHE board meeting, June 2013 (5)
-Monthly articles in the MHE newsletter (6)
-Support to initiatives of other European organizations (7)
-Press release “ Let the sunshine in”, WMHD 10 October 2013 (8)
-Bucharest Manifesto approval, MHE board meeting, November 2013 (9)
The MHE Beyond the biomedical
paradigm Task Force,
work accomplished so far
• Full Members:
Bob Grove -UK-; Stijn Jannes -B-; Vicente Ibáñez-Rojo -E-; Colette Versporten
-B-; Pino Pini -I-
• Correspondent members:
Josée Van Remoortel -B-; Elisabeth Muschik -A-; Nigel Henderson -UK-; Mary
Nettle -UK-; Stephanie Wooley -F-; kristijan Grdan -HR-, Birgitte Gorres -DE-;
Christa Widmaier-Berthold -DE-
• Staff:
Maria Nyman -B-
Members of the MHE Beyond the
biomedical paradigm Task Force
Mental Health Europe calls on:
1)The World Health Organisation (WHO) to ensure that the forthcoming revision of
International Classification of Diseases (ICD 10) takes fully into account the worldwide critique
of DSM-5 and involves people with lived experience of mental distress as equal partners in its
construction.
2) Medical insurance companies, service providers and planners to abandon DSM-5 as the only
source of criteria for access to treatment.
3) The American Psychiatric Association to respond to its critics and in particular to abandon
those new diagnostic categories which have no scientific basis and pathologise normal aspects
of human existence.
4) Pharmaceutical companies and research groups to register all trials on open access
databases and make all their trial data freely available for re-analysis.
The MHE Bucharest Manifesto’s
eight points
5) The European Union, national and local governments to pass “sunshine” legislation which
makes public all payments made by pharmaceutical companies to practising clinicians, other
providers of medical treatments and services and to consumer and family organisations.
6) Research bodies to prioritise research into positive mental health and psychosocial
approaches to alleviating mental distress and to ensure that people with lived experience
participate in research as researchers and experts as well as subjects.
7) Mental health practitioners to abandon psycho-surgery altogether.
8) In view of the latest concerns about the over-diagnosis of ADHD and risks to the developing
brain from medication, MHE calls on psychiatrists to stop prescribing stimulants or other
psychotropic medication as a first response to distress or as long term therapy for children and
adolescents.
The MHE Bucharest Manifesto’s
eight points
• DSM 5 and ICD 11
• Sunshine laws
• Collecting and disseminating new methodologies
and practices both for comprehension of mental
health problems and for evaluation of alternative
approaches to the bio-medical model
The Task force currently is concentrating
mainly on the following points
• Permanent monitoring of the bio-medical approach in terms
of reliability and scientific validity
• Ensure that the forthcoming revision of International
Classification of Diseases (ICD 10) takes fully into account the
worldwide critique of DSM-5 and involves people with lived
experience of mental distress as equal partners in its
construction
• Develop an independent voice by making links with other
independent people and organizations and establish
contacts also with WHO
DSM 5 and ICD 11
• The European Union, national and local governments to pass
“sunshine” legislation which makes public all payments
made by pharmaceutical companies to practising clinicians,
other providers of medical treatments and services and to
consumer and relative organisations.
• Pharmaceutical companies and research groups to register
all trials on open access databases and make all their trial
data freely available for re-analysis.
• Contacts with MEPs in order to stimulate them to work on
the development of Sunshine laws.
Sunshine laws
• August 2013 letter of support to the EMA’s position in
relation to The Guardian’s website article “Big pharma
mobilizing patients in battle over drugs trials data” released
on Sunday 21 July 2013
• September 2013 withdrawal of the Mario Negri Institut from
an European research project with GSK for lack of
transparency
• October 2013 letter from European Federation of
Pharmaceutical Industries and Associations (EFPIA)
• November 2013 letter from European Association of Hospital
Pharmacists (EAHP)
Communications related to transparency
where the Task Force has been involved
to a certain extent
• February 2014 Johnson & Johnson announced that it would give all the
pharmaceutical clinical trial data it holds to researchers J&J is following the
work of GSK who in 2013 launched an online data sharing portal that has since
been joined by some other pharmaceutical companies
• April 2014 Public Petition PE01493 at Scottish Parliament: A Sunshine Act for
Scotland. "Calling on the Scottish Parliament to urge the Scottish Government to
introduce a Sunshine Act for Scotland, creating a searchable record of all
payments (including payments in kind) to NHS Scotland healthcare workers from
Industry and Commerce":
http://www.scottish.parliament.uk/GettingInvolved/Petitions/sunshineact
• June 2014 petition of Alltrials Campaign group trying to influence governments
to pass legislation that would compel all pharmaceutical companies and
academics who undertake drug trials to place all their data and results in the
public domain. http://www.alltrials.net/news/open-letter-to-the-ema-new-
proposals-will-make-scrutiny-of-data-almost-impossible/
More recent events related to
transparency
• Supporting the growth of non-medical approaches and users' knowledge
(Peer support , Recovery models, Hearing voices groups, Personal
ombudsman, Joint Experiences and Local mental health Systems, Individual
Placement Support, Open dialog, Soteria project, Harm Reduction
Approach, Trialog models, etc.)
• Safeguarding the autonomy of the different approaches and their reciprocal
interactions, avoiding the medical approach making non-medical
approaches subsidiary and dependent on the medical model
• Balance between biomedical approaches and other approaches
Collect and disseminate new methodologies and
practices both for comprehension of mental health
problems and for evaluation of alternative approaches
to the bio-medical model
• Library to collect books, articles videos, etc.
• MHE website, links with other websites
• MHE newsletter
• Events (conferences, seminars, meetings, etc.)
Instruments
• Advocacy France
• AISMe. Italy
• British Psychological Society
• Critical Psychiatric Network
• European Network of Users and Survivors of Psychiatry
• Finnish Association for Mental Health
• GGZ Netherlands
• International DSM 5 Response Committee
• INTERVOICE
• Lille WHO Collaborating Center
• Mind UK
• Society of Social Psychiatry and Mental Health (Greece)
Contacts with organizations
• Invite other people outside Mental Health
Europe to also join the task force
• Organize different kind of initiatives
• Organize a meeting with the new MEPs at the
EU parliament in order to stimulate the
development of sunshine laws both in
Europe and in the member states
What MHE intends to do
Thanks for attention
The MHE Beyond the biomedical
paradigm Task Force
MENTAL HEALTH EUROPE – SANTE MENTALE EUROPE aisbl
Boulevard Clovis 7, B-1000 Brussels
Tel +32 2 280 04 68 - Fax +32 2 280 16 04
E-Mail: info@mhe-sme.org
www.mhe-sme.org

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The Mental Health Europe Bucharest Manifesto “Beyond the bio-medical paradigm of DSM and ICD diagnostic systems” (Pino Pini)

  • 1. The Mental Health Europe Bucharest Manifesto “Beyond the bio-medical paradigm of DSM and ICD diagnostic systems” Pino Pini Mental Health Europe International Network Toward Alternatives and Recovery (INTAR) Power to Communities: Healing through social justice University of Liverpool, United Kingdom 25th, 26th & 27° June 2014
  • 2. Mental Health Europe (MHE) A European non-governmental organisation committed to: - the promotion of positive mental health and well-being - the prevention of mental distress - the improvement of care - advocacy for social inclusion - protection of human rights for people with mental health problems, their families and carers
  • 3. • Established in 1985 as the European branch of the World Federation for Mental Health (WFMH) and is an organisation in its own right since 1994 • Representing mental health in its broader sense: No Health Without Mental Health! • Official relations with WHO Regional Office for Europe • Participatory status with the Council of Europe • Liaison function for mental health promotion with the European Commission About Mental Health Europe
  • 4. More than 85 member organisations in 34 European countries • Mental health promotion NGOs • NGOs representing users of mental health services • NGOs representing users’ families • Other European NGOs in the mental health field • Research and educational institutions + 60 individual members MHE’s members
  • 5.  Mental Health and Social Policy  Mental Health and Human Rights  MHE Thematic Committees  European Projects MHE’s areas of work
  • 6. • Mental Health Europe (MHE), the leading independent, pan-European mental health NGO, has for two years been calling for wider recognition of the crisis of confidence in the increasingly biological/neurological approach taken by Western psychiatry and for action to change the culture and practice of mental health services to take better into account the views, rights and lived experience of users of these services. • MHE set up an expert Task Force to investigate, debate and report on the development of DSM-5, its likely impact and on alternatives to the wholly medical/biological approach to psychiatry which are effective and which improve the lives and life chances of people with poor mental health. Now after our first 18 months of work, we have set out a manifesto for change. The MHE Beyond the biomedical paradigm Task Force
  • 7. • At the conference “From stigma to inclusion- drivers of progress in the mental health field” Bucharest, Romania, October 2013, the Task Force first presented the manifesto, which was unanimously adopted by the meeting. It calls on organizations with power and influence in the mental health field to take action which will move psychiatry and mental health services towards more effective treatments and a greater respect for the human rights of users. • The manifesto (now translated into six languages) is composed of eight simple, achievable points involving statutory bodies, such as the World Health Organization and the European Union, political bodies, practitioners, medical insurance companies, service providers and researchers, pharmaceutical companies and psychiatrists. • None of the demands are new and our research tells us that they are supported by many others in the field, but by bringing them all together for the first time, MHE hopes to spur a debate which will change the way in which policy, research and practice in the mental health field are conducted. The MHE Beyond the biomedical paradigm Task Force
  • 8. -Task Force establishment, MHE board meeting, November 2012(1) -MHE Position statement on DSM-5, February 2013 (2) -Survey on the MHE position statement. March-April 2013 (3) -Press release “More harm than good” concomitant with the DSM-5 publication, May 2013 (4) -Task Force strategy, MHE board meeting, June 2013 (5) -Monthly articles in the MHE newsletter (6) -Support to initiatives of other European organizations (7) -Press release “ Let the sunshine in”, WMHD 10 October 2013 (8) -Bucharest Manifesto approval, MHE board meeting, November 2013 (9) The MHE Beyond the biomedical paradigm Task Force, work accomplished so far
  • 9. • Full Members: Bob Grove -UK-; Stijn Jannes -B-; Vicente Ibáñez-Rojo -E-; Colette Versporten -B-; Pino Pini -I- • Correspondent members: Josée Van Remoortel -B-; Elisabeth Muschik -A-; Nigel Henderson -UK-; Mary Nettle -UK-; Stephanie Wooley -F-; kristijan Grdan -HR-, Birgitte Gorres -DE-; Christa Widmaier-Berthold -DE- • Staff: Maria Nyman -B- Members of the MHE Beyond the biomedical paradigm Task Force
  • 10. Mental Health Europe calls on: 1)The World Health Organisation (WHO) to ensure that the forthcoming revision of International Classification of Diseases (ICD 10) takes fully into account the worldwide critique of DSM-5 and involves people with lived experience of mental distress as equal partners in its construction. 2) Medical insurance companies, service providers and planners to abandon DSM-5 as the only source of criteria for access to treatment. 3) The American Psychiatric Association to respond to its critics and in particular to abandon those new diagnostic categories which have no scientific basis and pathologise normal aspects of human existence. 4) Pharmaceutical companies and research groups to register all trials on open access databases and make all their trial data freely available for re-analysis. The MHE Bucharest Manifesto’s eight points
  • 11. 5) The European Union, national and local governments to pass “sunshine” legislation which makes public all payments made by pharmaceutical companies to practising clinicians, other providers of medical treatments and services and to consumer and family organisations. 6) Research bodies to prioritise research into positive mental health and psychosocial approaches to alleviating mental distress and to ensure that people with lived experience participate in research as researchers and experts as well as subjects. 7) Mental health practitioners to abandon psycho-surgery altogether. 8) In view of the latest concerns about the over-diagnosis of ADHD and risks to the developing brain from medication, MHE calls on psychiatrists to stop prescribing stimulants or other psychotropic medication as a first response to distress or as long term therapy for children and adolescents. The MHE Bucharest Manifesto’s eight points
  • 12. • DSM 5 and ICD 11 • Sunshine laws • Collecting and disseminating new methodologies and practices both for comprehension of mental health problems and for evaluation of alternative approaches to the bio-medical model The Task force currently is concentrating mainly on the following points
  • 13. • Permanent monitoring of the bio-medical approach in terms of reliability and scientific validity • Ensure that the forthcoming revision of International Classification of Diseases (ICD 10) takes fully into account the worldwide critique of DSM-5 and involves people with lived experience of mental distress as equal partners in its construction • Develop an independent voice by making links with other independent people and organizations and establish contacts also with WHO DSM 5 and ICD 11
  • 14. • The European Union, national and local governments to pass “sunshine” legislation which makes public all payments made by pharmaceutical companies to practising clinicians, other providers of medical treatments and services and to consumer and relative organisations. • Pharmaceutical companies and research groups to register all trials on open access databases and make all their trial data freely available for re-analysis. • Contacts with MEPs in order to stimulate them to work on the development of Sunshine laws. Sunshine laws
  • 15. • August 2013 letter of support to the EMA’s position in relation to The Guardian’s website article “Big pharma mobilizing patients in battle over drugs trials data” released on Sunday 21 July 2013 • September 2013 withdrawal of the Mario Negri Institut from an European research project with GSK for lack of transparency • October 2013 letter from European Federation of Pharmaceutical Industries and Associations (EFPIA) • November 2013 letter from European Association of Hospital Pharmacists (EAHP) Communications related to transparency where the Task Force has been involved to a certain extent
  • 16. • February 2014 Johnson & Johnson announced that it would give all the pharmaceutical clinical trial data it holds to researchers J&J is following the work of GSK who in 2013 launched an online data sharing portal that has since been joined by some other pharmaceutical companies • April 2014 Public Petition PE01493 at Scottish Parliament: A Sunshine Act for Scotland. "Calling on the Scottish Parliament to urge the Scottish Government to introduce a Sunshine Act for Scotland, creating a searchable record of all payments (including payments in kind) to NHS Scotland healthcare workers from Industry and Commerce": http://www.scottish.parliament.uk/GettingInvolved/Petitions/sunshineact • June 2014 petition of Alltrials Campaign group trying to influence governments to pass legislation that would compel all pharmaceutical companies and academics who undertake drug trials to place all their data and results in the public domain. http://www.alltrials.net/news/open-letter-to-the-ema-new- proposals-will-make-scrutiny-of-data-almost-impossible/ More recent events related to transparency
  • 17. • Supporting the growth of non-medical approaches and users' knowledge (Peer support , Recovery models, Hearing voices groups, Personal ombudsman, Joint Experiences and Local mental health Systems, Individual Placement Support, Open dialog, Soteria project, Harm Reduction Approach, Trialog models, etc.) • Safeguarding the autonomy of the different approaches and their reciprocal interactions, avoiding the medical approach making non-medical approaches subsidiary and dependent on the medical model • Balance between biomedical approaches and other approaches Collect and disseminate new methodologies and practices both for comprehension of mental health problems and for evaluation of alternative approaches to the bio-medical model
  • 18. • Library to collect books, articles videos, etc. • MHE website, links with other websites • MHE newsletter • Events (conferences, seminars, meetings, etc.) Instruments
  • 19. • Advocacy France • AISMe. Italy • British Psychological Society • Critical Psychiatric Network • European Network of Users and Survivors of Psychiatry • Finnish Association for Mental Health • GGZ Netherlands • International DSM 5 Response Committee • INTERVOICE • Lille WHO Collaborating Center • Mind UK • Society of Social Psychiatry and Mental Health (Greece) Contacts with organizations
  • 20. • Invite other people outside Mental Health Europe to also join the task force • Organize different kind of initiatives • Organize a meeting with the new MEPs at the EU parliament in order to stimulate the development of sunshine laws both in Europe and in the member states What MHE intends to do
  • 21. Thanks for attention The MHE Beyond the biomedical paradigm Task Force MENTAL HEALTH EUROPE – SANTE MENTALE EUROPE aisbl Boulevard Clovis 7, B-1000 Brussels Tel +32 2 280 04 68 - Fax +32 2 280 16 04 E-Mail: info@mhe-sme.org www.mhe-sme.org

Editor's Notes

  1. (1) The idea to set up a special MHE group on DSM-5 is first launched in Autumn 2011 at MHE Executive Committee level and then relaunched in the general assembly. At the 17 09 2012 MHE Executive Committee expresses its concern that the process of DSM-5 development does not respect the social model of mental health, and instead takes a too medical approach as the drafting process has been heavily influenced by Pharmaceutical companies. It is decided that MHE should write statement/position and undertake some media actions, with the purpose to raise awareness about the developments of the DSM-5 and to highlight why the content is problematic, targeting the society in general, but more specifically the WHO and the next generation of psychiatrists. At the end of 2012 the DSM-5 task force is established in order to elaborate a MHE work strategy and position on the DSM 5 to be approved by the MHE board and to be circulated to all MHE members for advice. The involvement of all the MHE members has been necessary to share the huge responsibility to deal with a so complex issue which involves so many people in so different fields. MHE is not against any specific approach in itself, but very critical on the nowadays predominance of the bio-medical approach in the mental health sector where many kinds of approach instead are needed and in very different combinations. http://www.mhe-sme.org/index.php?id=93 (2, 3) The MHE first position paper on DSM-5 is agreed in February 2013 and is sent to a number of individuals and organizations. The response to the consultation indicates that our concerns are widely shared. An interesting survey on the opinion of people is organized by the MHE office. Many reactions come from very qualified international subjects (responses from 12 European countries plus USA, Australia and New Zealand. 29 organizations –professional organizations, universities, user and relative associations- and 24 individuals) http://mhe.peak-sourcing.com/index.php?id=106. This is encouraging for MHE to proceed in this direction. The following Critical Points have been stressed: -Low reliability and scientific validity -Mislabelling/harmfulness -Influence people towards bio-medical solutions also by giving them less and less alternatives -Conflicts of interest The following proposals for change have been made: -Stimulate alternative models to the bio-medical approach -stimulate models of good combination between the medical approach and other approaches (4) On the 17 of May the press release “More harm than good” is published and soon very appreciated http://www.mhe-sme.org/index.php?id=114 (5) June 2013, the MHE board on the basis of these encouraging responses decided to confirm the following three objectives of the task force: -permanent monitoring of the bio-medical approach in terms of reliability, scientific validity and economic interests issues (sunshine laws) -supporting the growth of non medical approaches and of the users knowledge -safeguarding the autonomy of the different approaches and their reciprocal interactions, avoiding the medical approach making non-medical approaches subsidiary and dependent on the medical model (6) N5/June 2013 Recovery; N° 6/July-August 2013 Collaborative projects to combine personal and local knowledge with the expertise of professional services; N 7/September 2013 DSM-5 does not help children (7) - Participation/organization of seminars, conferences etc. on this issue - Mobilize other European organizations in order to stimulate the establishment of sunshine legislation in Europe -Support the initiatives of other European organizations going in the same direction (see the letter of support to the EMA’s position in relation to The Guardian’s website article “Big pharma mobilizing patients in battle over drugs trials data” released on Sunday 21 July 2013) Establish contacts with WHO to influence preparation of the edition 11 of ICD (8) http://www.mhe-sme.org/index.php?id=110 (9) http://www.mhe-sme.org/index.php?id=130; https://docs.google.com/file/d/0B1-e9VIh-j1keEJkX2NXQVhBY0E/edit
  2. Meeting with the MEPs belonging with the MHE Coalition for Mental Health and Wellbeing