Report from Spain
Since the beginning of the Association we have worked to fulfil
and obtain the objectives offered by this one, such as: the necessities
or inquiries declared either in an individual or collective level
by affected people and relatives of them.
We've had a fruitful year because a great number of members is
making progess and also we have obtained a good economic support
from the Association.
In the same way on the previous years, the Directive Committee
is offering step by step of all the necessary ways to carry out
our projects.
Parallel to this, our effort must also set out for the creation
of other associations in other autonomic communities (provincies)
and it's coordination.
Lastly, we introduce you this dossier, which tries to expose in
outline the report of all the development made in 1995.
1. General Assembly
During 1995, an Ordinary and two Extraordinary General Assemblies
have been carried out, whose main planified functions are the
following:
- To modificate the statutes in order to extend the scope of
the organization.
- To carry out the first working-day on Systemic Lupus Erythematosus.
- Constitution of a local office in Granada.
- The election of several posts. Vice-chairman and Secretary.
- To register new members.
2. Head Committee formed by representatives of each Autonomy.
3. Board of Directors
Which is formed nowadays by eight members of the Association in
Málaga, with the roles of: Chairman, who is Pilar Alvarez
Siles, Vice-chairman, Treasurer, Secretary and five Committee
Members.
During 1995, four boards of Directors have been made and the main
decisions agreed were:
- Attendance and participation to the Annual Assembly of the
European Federation in Lisboa.
- To get in touch with other groups of other provincies for
people affected with Lupus and to convene meetings with their
representatives.
- The opening of support and dependent therapy center of the
Association.
4. Secretary
The most outstanding roles and donations developed through the
year from the Secretary's office, keeping out the usuals, are
the following:
- Employment of an auxiliary office-worker.
- A new informative bulletin is elaborated through the informatic
support acquired.
- Search and management to the acquisition of a new place (room).
- Development and management of administrative work.
5. Treasury
In this section, the economic balance of the Association is presented.
The fees of the members are not deposited completely because those
families with economic scanty resources are allowed not to pay
these fees.
The income has increased from 2.191.554 ptas. in 1994 to 12.765.197
ptas. in 1995.
This doesn't mean that in the following years we will reach those
similar incomes.
Objective:
To encourage the prevention of the disease promoting campaigns
in two levels:
- Primary prevention, by means of informative campaigns to the
general population, doctors and sanitary staff, in particular.
- Secondary prevention, trying to stop the pathological process,
to reduce the course of the Lupus disease and treatments, as well
as avoid the chronic results.
- The realization of census with sick people affected with Lupus.
We intend to detect the great possible number of patients in order
to take benefice from the services that the Association gives
to them, as well as to go in pursuit of these people. By means
of contact with hospitals, health centers and private doctors
have been made.
- The research of the social, familiar and working problems
of the people affected with Lupus, with the purpose of determining
the influence that this one has on the day-life of these people
in relation to their familiar, social and working environment.
- Spreading and sesitization of the disease to the population
in general, through the diptychs and informative booklets about
the features of the disease, conferences, talks in health-centers,
colleges, etc.
- First National and Autonomic working days on Lupus that tried
to give notice the social and sanitary reality of the disease.
The best doctors in Spain were in this Conference. It was a great
success of attendance and participation.
- The winning of affected people in othern autonomies by means
of advertisements, publications in newspapers and contact with
doctors and hospitals.
- Collection of information through foreign Associations, such
as European and American Federations.
Objective:
To help solving the problems as individuals as familiars through
particular resources.
Projects:
- Direct Assistance Service that pretends to provide
a clear and exact knowledge of all the posssible resources which
can contribute to improve a particular situation, being ist main
activity to guide, inform and consult about issues such as: properties
pensions, support, holidays, etc.
- Psychological Assistance Service that tries to help
these people.
- Convincing and Formation of Volunteers with the purpose
of making them participate in activities and programs of the association.
Objective:
To provide the best conditions in order to face against the process
of the disease and to get the best level of rehabilitation of
the reduced functions of it.
Projects:
- To create a handmaking work-shop in order to provide interpersonal
relationships improving the self-esteem and encouraging the creation
of self-support groups.
- To create a project of information and formation for the health
in order to provide some information about all the issues that
can be of interest for Lupus sufferers, to be active subject of
their own integral rehabilitation.
- Articles from Lupus foreign magazines are translated and are
spread through an informative bulletin.
Objective:
To improve the life quality promoting the education and participation
of the members.
Projects:
- To create groups of self-support in order to overcome and
face the process of the disease and reach the recovering from
it by attending the periodical meetings.
- To provide an orientation and formation for people who are
affected in order to get a job and encourage them to make a productive
activity. This can be carried out by giving information about
the different courses of formation, jobs, offers and employment
bureau.
- Course of handcraft gold embroidery with the purpose of forming
and qualifying professionally to the people affected in order
to reach a very good quality of life. It's totally granted by
the Andalussian Council.
The staff who is working for our Association at the moment are:
- Two Social Workers whose main functions are Direct Attention
and Coordination.
- A Social Graduate as a labour advisement.
- An Auxiliary office-worker who is not qualified.
- An office worker who works with computers.
- A translator with qualification.
- And, finally, an Economist with the main functions of management
and accounting.
- The edition of a medical support that will consist of elaborating
a document where the features of the disease are revealed. You
can make use of it when you travel, for instance.
- A course of formation and management that consists of organizing
quite frequently informative meetings about the creation and management
of new associations to obtain a better functioning from these
ones.
- The creation of the telephonic information "Direct Line"
which intends to facilitate information for all the people affected,
the same as relatives about the disease, giving them medical support
and offering them ?advising? to prevent it.
- The creation and design of a magazine to expand a knowledge
of the disease to the professional level: doctors, A.T.S., psychologists,
social workers, etc.
- We also want to join the support Associations in Spain in
order to create a Federation in Málaga.
Viviana Micheli Sicilia
[C & S]
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CARING AND SHARING
Newsletter 6, December 1996
E. L. E. F.
European Lupus Erythematosus Federation