The Mental Health Europe Bucharest Manifesto“Beyond the bio-medical paradigm of DSM and ICD

diagnostic systems”

Pino PiniMental Health Europe

International Network Toward Alternatives and Recovery (INTAR)Power to Communities:Healing through social justice

University of Liverpool, United Kingdom25th, 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 attentionThe MHE Beyond the biomedical

paradigm Task Force

MENTAL HEALTH EUROPE – SANTE MENTALE EUROPE aisblBoulevard Clovis 7, B-1000 Brussels

Tel +32 2 280 04 68 - Fax +32 2 280 16 04E-Mail: info@mhe-sme.org

www.mhe-sme.org