and Discrimination Faced by People with Psycho-social
Disability in Health ServicesA European Survey
The action project "Harassment and discrimination faced
by people with psycho-social disability in health services"
is organised in the framework of the Community Action
Programme to combat discrimination 2001-2006, and is funded
by the European Commission -Employment and Social Affairs.
The overall aim is to raise awareness about the discrimination
faced by people with mental health problems in health
care services and to promote strategies to combat it.
The recommendations are based on the opinions of the
national partners and the European
Network of (ex-)users and survivors of psychiatry (1)
and are inspired by the results of the focus groups that
were held during the first year with (ex-)users and survivors
of psychiatry and health professionals.
Every day, people affected by mental health problems,
as well as carers and relatives, face harassment and discrimination
in diverse areas of their lives. This reduces the possibility
of recovery and integration in society.
Before summarising possible measures, emphasis should
be put on the importance of the participation of (ex-)users
and survivors of psychiatry in the formulation and implementation
of these measures. The starting point for tackling harassment
and discrimination that people with mental health problems
or that are called mentally ill and their relatives experience,
is their participation in the fight against this discrimination
at various levels. The knowledge and expertise with which
they can contribute is unique and of an enormous value.
This is why measures that address discrimination and harassment
must be elaborated by those who suffer from this situation
as well as by experts and professionals. The motto "nothing
about us without us" of the 2003 European Year of People
with disabilities must become practice.
We suggest the development of strategies to change attitudes
and the behaviour of the general public and particularly
of (mental) health workers. To reduce or eliminate discrimination
and harassment an explicit formulation of 'good practices'
or care standards and laws on the equality of treatment
should be developed and linked with the installation of
boards of appeal.
Adequate funding, organisational involvement and support
of policy makers are a pre-requisite for the realisation
of these recommendations.
1. IMAGE BUILDING
There is a need for the development of programmes to
improve public perception of people with mental health
problems in the general population. As future aims, programmes
should also be developed for journalists and for schools
to change the general behaviour and attitudes in the EU
It is important that those programmes should be organised
by groups of health professionals, (ex-)users and survivors
of psychiatry and carers and be focused on the theme "harassment
and discrimination - what can be done?"
Everyone should value and support diversity.
Everyone should listen to, and value people's experiences.
2. PROMOTION OF THE MOVEMENT OF (EX-)USERS AND SURVIVORS
The (ex-)users and survivors of psychiatry movement should
be promoted. They should support and reinforce campaigning
and decision-making at all the levels, in particular at
the level of professionals' organisations and political
organisms. Effective participation of trained (ex-)users
and survivors of psychiatry is essential for the implementation
and development of quality standards and research projects.
Funding and support should be invested in:
(free) training programmes for (ex-)users and survivors
of psychiatry so they can protect themselves from
discrimination, become user/survivor workers employed
at all levels and become trainers themselves in programmes
to combat harassment and discrimination.
the effective representation of (ex-)users and survivors
of psychiatry or user/survivor workers in crisis centres,
counselling centres, public relations work, research
projects, congresses, networking and international
exchange of organisations representing (ex-) users
and survivors of psychiatry.
the support of initiatives of peer coaching, regional
self-help centres and meeting places.
3. SENSITISATION AND TRAINING OF SOCIAL AND HEALTH PROFESSIONALS
Discrimination and harassment experienced in the health
field is especially important not only because social
and health professionals are directly involved in the
recovery of the people with a mental health problem and
their carers, but also because in many cases this discrimination
passes unnoticed or unchallenged.
The mental health service user/survivor experience
and perspective should be represented at all stages
in the training of health care professionals, right
from the start of their professional career. This
will help professionals to become more familiar with
the user/survivor perspective, that is in definition
different from their own.
The basic training of health care professionals should
pay more attention to the acquisition of patient-centred
communication skills to discover their needs, wishes,
demands and concerns and to come to an agreement regarding
the content and process of care. Institutes should
pursue a policy which presupposes, supports and stimulates
a patient-centred attitude. Legislation should ensure
that the working environment respective the financial
conditions and that employers make it possible for
the health professionals to engage in such activities.
Training programmes should focus on improving knowledge,
broadening skills and changing attitudes.
Professionals should learn and be allowed to:
take responsibility to challenge and expose discrimination
and harassment faced by people who experience mental
value the perspectives of (ex-)users and survivors
see the whole person rather than the diagnostic
reduce the great distance with which the professionals
currently approach their patients.
Prevention is as important as training. Selection procedures
of health care professionals should include a verification
of the attitudes towards target groups that are at risk
for discrimination (like ex-users and survivors of psychiatry
and other minority groups). It is a good policy to include
(ex-)users and survivors of psychiatry in the recruitment.
4. QUALITY STANDARDS OF CARE
Beyond the relationship between the caregiver and the (ex-)user
or survivor of psychiatry, there is the higher level in
the organisation of care that is crucial in combating discrimination
Referral systems should be designed in a way that does
not allow discrimination and harassment. For instance,
a diagnosis should not be communicated to others without
permission of the client. Electronic care records should
be protected in a way that professionals can only see
the information they really need. Informing the client
is crucial. Only clients who know their records can
give meaningful permission.
Records of people with psychiatric diagnoses should
not be treated in a different way than records from
people with medical diagnoses. Dealing with records
without permission shall be possible only in the presence
of mortal danger to self or others, when the ability
to express a natural will is temporarily reduced.
Accident and emergency admission protocols should enable
patients to receive the appropriate physical care they
need. These protocols must be handled flexibly.
5. LEGISLATION ON DISCRIMINATION AND BOARDS OF APPEAL
Laws on equality of treatment should be adopted and funds
provided so that these laws can be put into practice.
One major objective is to adopt laws that guarantee
the respect of human rights in a pro-active way. These
laws should focus on the protection of human dignity,
the right not to be violated, the right to self-determination,
the right to privacy and the right to respect.
For example through
legal protection of advance directives, or through the
introduction of a suicide register.
There should be boards of appeal that receive the authority
and structural guaranteed possibilities to sanction
institutions and to influence decision-makers.
They should be:
organised nationally, regionally and locally;
easily accessible (anonymous upon request) and
functioning independently from medical and psychiatric
institutions (to protect confidentiality and to
guarantee the support of victims of discrimination
as it is demanded by the anti-discrimination framework
of the European Union.
It would be desirable that the controlling is by (ex)-users
and survivors of psychiatry. The possibility to ask
for professional advice when needed should be there,
the financial resources for such advice too.
6. INVOLVEMENT OF POLICY MAKERS
The health rates of the citizens of a country are a criterion
of well-being and mental health is a key point in this respect.
It is important that policy makers become aware of
the tremendous lack of resources in the health field
in general and particularly in mental health. This lack
of resources is both structural and in human personnel
and results in worsening treatment and care that hinders
recovery and can lead to patients becoming chronically
ill. This leads to social exclusion, preventing the
patients from having equal opportunities in life, increased
risk of marginalisation, disability, physical illness
and mental disorders, high rates of early retirement
pensions and major public expenditure in the long term.
The allocation of more resources to the Mental Health,
and in particular to preventative care and early intervention,
area is essential.
The elaboration of appropriate and realistic Mental
Health Plans that are in accordance with the reality
of the country, and more important yet, with the reality
of the disability, have to be supported at all levels.
To create the right of full involvement of (ex-)users
and survivors of psychiatry and carers organisations
as they are indispensable elements. This is so that
people with MH problems and their relatives enjoy the
status they deserve as citizens with full rights.
There is a need for a concerted effort on the part of the
general public and professionals of mental health care and
of health care to change attitudes towards people with mental
health problems. Greater efforts must be made not only to
increase awareness of the discrimination and harassment
routinely faced by people with mental health problems and
their families, but also towards the allocation of resources
that ensure an improvement in the quality of the treatment.
Financial resources, structural and organisational changes,
which enforce the movement of (ex-)users and survivors of
psychiatry, the explicit formulation of quality standards
of care, the adaptations of laws and the involvement of
politicians should help to make this possible.
(1) The term "user of psychiatry"
refers to people who have mainly experienced psychiatric
treatment as helpful. The term "survivor of psychiatry"
in turn refers to those who have mainly experienced psychiatric
treatment as being a danger to their health. These definitions
are often misunderstood: to "survive psychiatry" does not
mean that psychiatrists are being accused of trying to intentionally
kill people. But it does mean that diagnoses such as "schizophrenia"
or "psychosis" very often have a depressing and stigmatising
effect, leading to resignation and chronic hospitalisation.
And it means that drug-effects such as neuroleptic malignant
syndrome or tardive dyskinesia or dystonic or epileptic
attacks can be a danger to health and life, which have to
be survived. (back to the footnote-call)