European Network of exUsers and Survivors of Psychiatry ENUSP

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European Network of (ex-)Users and Survivors of
Psychiatry (ENUSP)

• Umbrella organisation
• Fight harassment and discrimination
• Integration of users/survivors into all European
  bodies
• Motto Nothing about us without us
• Participation on all decision levels
• Respect,tolerance and valuation of diversity
• (values of the Network)

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My background

• User since 1988
• Organized Enusp 2.nd Conference 1994
• Founded User driven Local Radio station in
  Copenhagen 1992 still running
• Network place user-run Record studio etc.
• Co-founder of User organisation LAP
• Today Project Turning point Recovery
  competence/Empowerment/How to Recover from severe
  mental health problems

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Where are we now?
1970 1990 From asylum to the streets 1990
2004 Neo-institutionalisation 2004 - ?
Not only be tolerated in the Society- but
being appreciated in all parts of society
-with acknowledged roles to play- and
equal opportunities to participate
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Users standpoints?

• Different ways to identify the problem
• Psyko- Social
• Severe Mental Disstress
• Medical condition
• Other
• Mary OHagans summary

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Work as a way to inclusion?

• Absolutely not all kind of work
• In the 15 member states of EU before mai 2004
• the cost of stress in the working place and the
  hereby related mental health problems was about
  3-4 of the GNP , a sum yearly amounting 265
• Billions Euro (WHO)
• Work can cause exclusion as well as inclusion
• The question is whether people rather should have
  work injury compensation than disability pension.
• If you become mentally ill in your work you
  probably will not return to the same job.

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Best way to Inclusion

• You are not excluded in the first place
• We should not be satisfied by what we can do
  after psychiatric treatment
• Focus more on prevention
• But we need to change The psychiatric treatment
  into one which do not have fatal consequences for
  the individual
• Open Dialogue in psychosis a new approach

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OPEN DIALOQUE MAIN OBJECTIVES

• Help within 24 hours
• Crisis approach- open dialogue all voices must be
  heard -
• No neuroleptics as initial treatment
• Never discuss -without the user is present
• Network invited always
• Need adapted approach
• Goal not to be committed and to come back to
  normal routines as quickly as possible

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• COMPARISON OF 5-YEARS FOLLOW-UPS IN WESTERN
  LAPLAND AND STOCKHOLM
• ODAP Western Lapland Stockholm
• 1992-1997 1991-1992
  N 72 N71
• Diagnosis
• Schizophrenia 59 54
• Other non-affective
• psychosis 41 46
• Mean age years
• female 26.5 30
• male 27.5 29
• Hospitalizationdays/mean 31 110
• Neuroleptic used 35 93
• - ongoing 17 75
• GAF at f-u 66 55
• Disability allowance
• or sick leave 19 62
• Svedberg, B., Mesterton, A. Cullberg, J.
  (2001). First-episode non-affective psychosis in
  a total urban population a 5-year follow-up.
  Social Psychiatry, 36332-337.

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My recommendations

• Always invite users in the decision making
  process
• Strengthen the user-movements in your
  region/country form partnerships
• Give x-users survivors a normal,descent salary
  for their work do not let them work too long
  as volunteers without payment.
• Do not base everything on projects
• get it implemented

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• Support the idea that every country need at least
  one University for Mental Health with research
  based on Humanistic, Social Science and Nature
  Science
• Maybe promote to have a ministry of Mental
  Health in your Country
• Be sure to use us who have become
• experienced experts in the field.
• Lobby for us so we also get funding
• for our European Network its not nice that we
  always have to ask the other European
  organisations for money to tickets and hotel
  expenses

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What we want -Mary OHagan

• We want access to services that respond to our
  stated needs whoever we are, and wherever we are,
  and whenever we need them
• We want services which at the very least will do
  us no harm
• We want more ways to understand and deal with our
  mental distress than those offered by the medical
  model
• We want less pills and more assistance to regain
  the social and material opportunities we have
  lost

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• We want voluntary not coercive services
• We want the power to choose the services we want
  and to change the ones that aren't working for us
• We want the skills and resources to run our own
  services and other opportunities to use our
  competence
• We want a way out of mental health services
• We want the same rights, responsibilities and
  opportunities as other citizens

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• We want equal access to education and employment
• We want an adequate income
• We want reasonable housing
• We want to belong to a family

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Where to Contact usWWW.ENUSP.ORG