European Network of (Ex-) Users and Survivors of Psychiatry

Vesterbrogade 103, 1.sal

1620 Kbenhavn V, Denmark
Tel: +420 224 910 552
enusp.info@gmail.com
www.enusp.org

Ladies and Gentlemen, I am Olga Kalina, Chair of the European Network of (Ex-) Users
and Survivors of Psychiatry. ENUSP is the only independent network of mental health
service users and survivors of psychiatry at European level. Our 40 member organizations
and individuals in 21 countries are united in the fight for human rights and selfdetermination. I would like to briefly describe the main challenges and achievements that
ENUSP sees in Work Package 5, and also to address the main problems that we currently
see and experience with community services.
Past suggestions of ENUSP for WP5 which remain relevant
ENUSP has been a Collaborating Partner for WP5. At earlier events, during the working
process, our representative Ms. Guadalupe Morales, along with other ENUSP
representatives throughout the years, insisted on the importance of users being at the
center of all processes, particularly in the area of accessing funding and ensuring
representation both on the national, as well as the EU level. Ms. Morales' had suggested
the recommendation: "Promote, reinforce the users' movement and access to EU
Funding."
She mentioned the need to enforce the UN Convention on the Rights of Persons with
Disabilities and apply its standards to the whole working process of the Joint Action. She
put a particular emphasis on the UN CRPD standards' application in the areas of human
rights, deinstitutionalization, discrimination and lost opportunities, recommending peer-topeer and training-the-trainers programmes to strengthen capacity building.

With regard to the Problems that we see in WP5

- A medical approach over a human rights approach
ENUSP is concerned by the fact that the current approach to mental health care is biased,
and the emphasis is placed on the old paradigm of illness, where patients are seen as
subjects of care, rather than holders of rights.
The same tendency can be seen in the text of the WP5. Although human rights are
mentioned throughout WP5, sometimes with great strategic meaning and important stress,
they are not taken as the primary consideration, especially when reasons for the reform
are mentioned. Usually human rights are mentioned after adherence to treatment or other
health benefits. But here, the impression is that family relationships, friendships and
employment are not considered as goals in and of themselves, but only as a pathway to
"early treatment" and "rehabilitation".
Generally, the report states that transfer to community based care is essential for
delivering high-quality services, but not for better protection and realization of human rights
in the first place.
One may wonder - why it is important to consider human rights first? Is it not enough to
mention them?

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The answer is, no. Because if we place treatment as the number 1 priority, implicitly this
would mean that forced interventions are acceptable, as well as other human rights
violations on a continuum with the belief that they are beneficial to the health of individual
patients, or to decrease the disease burden at large. So, our point is that in a situation
when human rights contradict medical considerations, the priority should be given to a
human rights based solution, particularly when it comes to the right to choose and to
refuse treatment.
- Reforming the system
Likewise, if we consider the reform of the system, it is not medical considerations, but a
human rights approach that should be the first and compelling reason for change. Also, it
is important to remember that the UN CRPD supports a social concept of disability, rather
than biomedical, making the medical component of services just one of the many that are
necessary for the realization of human rights and the well-being of people.
The same is true for cost savings. They should not overshadow the human rights based
approach and the right to the highest possible quality standard of health care.

Particularly good messages from WP5

With regard to particularly good messages found in WP5:
It is good news that the process of deinstitutionalization and the development of
community-based care have been adopted as major mental health policy goals for more
than half of EU States.
ENUSP is very pleased that WP5 clearly stresses as a recommended action, the necessity
to revise and update mental health legislation according to the principles of recovery and
the recommendations of the UN CRPD, as seen here:

Encourage and promote the revision and updating of mental health policy, based
on human rights and the available evidence, in countries where this is needed;
Promote the revision and updating of mental health legislation, taking into account
the principles of recovery and the recommendations from CRPD;

ENUSP welcomes the fact that the promotion of active involvement of users in the
delivery, planning and reorganization of services is also among recommended actions, as
well as development of self-help and users and carers groups, as stated in the WP5
report:

Promote the active involvement of users and carers in the delivery, planning and
reorganization of services;
Develop self-help and users and carer groups.

However, our members often complain of token representation and the true extent users
are meaningfully and equally involved in mental health care policy, monitoring and
evaluation. National funding for the majority of our member organizations also remains
very difficult to obtain while demands from the national authorities on user/survivor

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organizations have grown. Therefore, we hope that these recommendations will be taken
seriously by policymakers in all European countries.

But again we see the problem of...

a biased approach, where the accent is heavily placed on the medical model and
pharmacological treatment whereas we should expect much more from the very title of
community services. As we can see from the results of WP5, this still too often common
feature of mental health care leads to a lack of participation by other important specialists:
psychologists, social workers, occupational therapists, not to mention self-help groups and
other peer-designed and led support services which are worthy of increased financial
support. This is quite worrisome.
However, even more worrisome is the lack of balance sometimes clearly seen among
examples of best practices described in WP5. For example, in Portugal (WP5, page 122),
mental health integration in the primary health care system envisages treatment of
depression first according to algorithms, which cover diagnosis, medication type or dose
and review times. There is no recommendation that referrals should be made at this point,
for example to a psychologist. In case of more serious problems, the report states that
referrals MUST be made to a psychiatrist, and further referrals CAN be made to
psychologist. The difference in the language is obvious. In our opinion, this is unrealistic
considering the current demography of psychiatrists in Europe, the increased need for
psychological support among all people, and the fact that in any event, it is well known that
if medication is used, better outcomes are achieved when psychotherapy is availed of at
the same time.
From our perspective, further efforts are needed in order to eliminate this bias, including
on a theoretical level, in order to build a truly balanced system of care.

Fear and desire to control: factors that may influence reforms

Another problem reflected in WP5 is that Discrimination is not taken seriously into
consideration (see Table IV. 53). The measures against discrimination are enforced in only
two countries out of the 9 participating countries of WP5. At the same time, discrimination
and stigma are widespread and largely affect peoples lives.
Discrimination and stigma actually affect not only communities, but policymakers and can
influence reforms. For example, in the SWOT analysis of one of the countries (Estonia),
the following opportunity is mentioned in first place: 1. Larger communities (towns) are
not disturbed by people with mental health problems. (page 112).
If this is what is desired, that people with mental health problems stop disturbing the larger
communities, what would be the outcome of a reform? The most likely outcome would be
reinstitutionalization.

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Reinstitutionalization
The size of the institution or the name doesnt really matter. The main thing is the system,
the rules. This was proven to be a problem for residential institutions that according to the
findings of the WP5 report in most cases are not community based and are similar to
traditional psychiatric hospitals. The same problem may be true for General Hospitals. It is
possible to open beds in the hospitals, but with different rules than for other patients and
unequal treatment. There is a real danger that reforms may happen on paper, by changing
names of the institutions, but not changing the meaning.
Another bad sign illustrated in the report is that 6 countries transferred patients to large
mental health institutions (after 1998),
2 countries even transferred to forensic units, 3 to other mental hospitals (page 52).
We also know that in France, for example, 6 forensic units have been built since 2007
initiated by former President Sarkozy with a current total of 10 in the country.
In Portugal (page 126) the percentage of compulsory admissions increased from 5 to 10%
(from 2000 to 2011). Again, this is not a good tendency.
In France, the number of compulsory admissions increased by 50% in the five years
between 2006 and 2011 according to the only recent report available (Robiliard
Parliamentary Report, Dec. 2013 (see: http://www.assemblee-nationale.fr/14/rapinfo/i1662.asp).
The general prison population has increased in all countries between 16% and 104%
(WP5, page 22) after closure of the big psychiatric institutions, and this rise is regarded by
researchers as suggestive of reinstitutionalization and possibly a result of discrimination
and stigma and a desire to control risks.

Community treatment by force

It is important to remember that sometimes community treatment in practice still means
treatment by force. From the descriptions of community services it is hard to see how
much force is used. However, for example, we note with regret that one good practice
described in WP5 states that the quality assurance programme makes it mandatory for all
discharged patients to have an appointment scheduled in the following two weeks with the
community team (page 125).
It is not quite clear how this is enforced. It is also not clear whether service users consent
is required for follow-up home visits. Greater attention to the human rights and quality
indicators would be seriously needed here for such important aspects.
We are also extremely concerned about community treatment orders where persons are
forced to take treatment, leading to social control and the opposite of a community
approach.

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ENUSP has a clear position against forced treatment. Just a few months ago we
responded to the public consultation on the Draft Additional Protocol to the Oviedo
Convention stating that Forced Community Treatment or any other forced treatment, is the
opposite of empowerment, recovery, inclusion and well-being.
A preference for carers over users
Yet another concern of ENUSP is that in WP5, carer and family involvement is envisaged,
while user involvement is not. For example, according to the data presented, caregivers
participated in the planning of closure/downsizing of mental hospitals in Spain and in Italy
(Lombardi), but users were not involved. This was before 1998.
Another, more recent example: only three countries out of 9 WP5 participants involve
users in their national and regional level review bodies, while 4 countries involve carers
(Table 4, 47).
Yet another example: table 4, 55 with Italy, Lombardi, where carers are involved in
planning, implementation and review of mental health activities, while users are not.
In one case described in WP5 (page 105, Principle 6), training and education are
envisaged for family members, but not for service users.
In the assessment of one of the practices in Portugal, it was said that carers satisfaction
with services increased, while nothing was said about the attitude of service users. (page
121).
Only in one case users involvement was envisaged while carers/families involvement
was not (Table 4,55. Portugal). So, here we see that the tendency continues to involve
carers/families more often than user/survivor representatives themselves, which is already
the case in many countries.
It is important to remember, that service users are those who receive the services, and
therefore our involvement as those who are the most concerned must always be promoted
and facilitated. Additionally, the interests of carers/family members and service users
significantly differ in certain areas, and there is no excuse for our exclusion from the
decision-making processes that directly affect our lives.

Lack of quality control

Another big problem mentioned in WP5 is lack of quality control.
The global SWOT analysis given in WP5 proves that lack of a quality culture is present,
followed by a lack of monitoring, insufficient research on services and insufficient impact of
users and families. Some countries mentioned lack of quality control and feedback after
deinstitutionalization.
From our perspective, such lack of quality control may not only lead to deteriorated quality
of services, but to the reforms being implemented in the wrong direction.

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Solutions
We believe that in order to be successful, mental health reforms must be based on the
current human rights framework, particularly on the UN CRPD, and clear quality standards
must be developed and applied. Naturally, the quality indicators must be based on a
human rights framework.
Among the most important quality indicators should be the satisfaction of users with the
existing service, user involvement in the design and monitoring of services and the right to
plan and review our own care plans.
It is absolutely necessary to abolish forced treatment and all types of forced measures,
such as involuntary hospitalization, physical and chemical restraints, etc., especially in
light of the recent guidelines of the CRPD Committee on article 14. Research is needed to
identify and evaluate services that are provided in accordance with the requirements of the
UN CRPD. It was encouraging to see in WP5 that some countries have made great steps
to improve services without having to use force for patients to accept their services, such
as in Italy (example: WP5, page 119). Such practices should be studied, evaluated,
expanded and replicated.

Involvement of users: scale and quality of involvement

Quality should also be taken into consideration for user involvement. Again, too often
user/survivor involvement is tokenistic and not meaningful in terms of having a real
influence and impact to change the outcome of the process we're involved in.
Participation of users is included in the list of facilitating factors given in WP5. But what is
the most important, is that this involvement is required under the UN CRPD. Without
meaningful involvement we will remain just subjects of care, rather than participants and
holders of rights.
Users meaningful involvement should be a necessary component of any service, and not
just a matter of good will of the policymakers or service providers.
Users should truly be at the centre of all processes. There is a further need to reinforce
users participation in all processes in the EU. This includes in particular access to EU,
State and public Funding in order for organizations to be in a position to represent this
important and growing sector of the population.

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Best practices recommended by ENUSP
ENUSP recommends the following services for the consideration of policymakers.

Open Dialog Approach from Finland (see:

http://www.mindfreedom.org/kb/mental-health-alternatives/finland-open-dialogue)

Family Group Conferencing (FGC) from the Netherlands (see:

http://punkertje.waarbenjij.nu/reisverslag/4567654/presentation-text-on-eindhovenmodel-cosp)

Advance Directives

The Personal Ombudsman from Sweden, organization Po Skane (see:

http://zeroproject.org/policy/sweden-2/)

Leeds Survivor-Led Crisis Service (see: http://www.lslcs.org.uk/)

Maytree Sanctuary for the Suicidal in London (see: http://www.maytree.org.uk/)

Peer-Advocacy and Peer train-the-trainers programmes, Fundacion Mundo

Bipolar in Spain (see https://ru.scribd.com/doc/295988242/Articulo-Vertex ), and
Advocacy-France in France (see http://www.pairadvocacy.eu/)

Peer-run crisis and support services, including peer-run respite houses,

Western Mass Recovery Learning Community (RLC), USA (see
http://www.westernmassrlc.org/about-us) and Weglaufhauses Villa Stckle,
Germany see: http://www.weglaufhaus.de/)

Support for withdrawal (see: http://www.peter-lehmannpublishing.com/books1/withdraw.htm )

We also recommend:
The 4PI National Standards, developed by the National Survivor User Network
(NSUN), in the UK. These are standards for good practice and to measure, monitor and
evaluate involvement, which consist of: * Principles * Purpose * Presence * Process *
Impact (see http://www.nsun.org.uk/assets/downloadableFiles/4pi.-ni-standards-forweb.pdf).
Most of these services and practices are user-led and not only provide help to people in
need, but they also serve as a tool for empowerment of user groups and contribute to their
meaningful inclusion in the community.

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Conclusion
We would like to stress once again, that research is needed to identify services compatible
with the requirements of the UN CRPD and other relevant human rights treaties and which
respect the rights, will and preferences of service users. People with psychosocial
disabilities must be involved in research from the start, and, most importantly, the main
drive for the reform should be human rights considerations, not medical care or cost
savings.

Thank you very much for your attention.