 The
A.G.B.E., "Association of parents of children affected
from blood diseases ", is an association that carries out the
own function of associate-sanitary association with its interest
for the minors with handicap ("small oncological and
haematological patients") and of their families to the aim to
improve the quality of life. The association strives itself
daily for: to alleviate the psychophysical and emotional
problematic for the children affected from leukaemia, solid
tumours and other blood diseases; to pull down the loneliness of
the disease; to support the families that face the drama of the
stay in hospital of the own sons in the unit of paediatric
haematology, paediatric surgery and the transplants of bony
marrow; to safeguard and guardian the dignity and the rights of
the small patients; to favour their former position in the
normal context of life with the last scope to improve the
quality of the stay in hospital, as well as the future of the "small
patient" and its family, being them Italians or foreigners. A
sick child is first of all a child and that for such reason is
above all important a global approach, an attention to taking
itself cure, and to not only cure; in virtue of such principle
our action has been articulated, it articulates itself and it
will articulate itself with the following modalities.
What we have done:
• The association has established the Unit of Pediatric
Onco-haematology with rooms to child measure, a plan carried on
thanks to the contribution of "Thirty hours for the life";
• has thought and build a space adapted in day hospital reserved
for children only;
• has thought and made a pamphlet containing norms of protection
and economic facilities in favour of the families;
• has collaborated, and will continue in this direction, with
the school in hospital, a valid idea carried out that
contributes to make more real and joyful the day of stay in
hospital and/or the day in day-hospital of the families hit from
the drama of the leukaemia;
• we have thought and stamped a pamphlet on the validity of the
family children’s doctor, on the acceptance in day hospital and
pamphlets and video on the hygiene of the venous blood catheter
and facilities;
• We are building an house in order to accommodate the families
coming from the province or outside region;
• We have rent 4 apartments in order to accommodate the children
of the "Albania Plan" who come in Italy in order to carry out
the transplant of bony marrow which is the definitive solution
for the thalassaemia. "Albania Plan": In 2005 the Abruzzi Region
has lavished funds necessary in order to able free of charge the
transplant of bony marrow for the thalassaemic patients from
Albania. The plan will have triennial duration with perspectives
of renews and widening for the following years. The transplant
of bony marrow comes executed to the patients children
transfusion-addict affections from thalassaemia major that they
decide of compatible a familiar donor HLA. The management of the
permanence in Pescara of the patient’s family is guaranteed from
our association, that is present in the unit with a sociologist
who supplies a complete attendance to the child in-patient, to
his parents and to his brother donor.
• We have purchased, and will continue to buy , how much
necessary during the stay in hospital for the families - above
all for those in economic difficulties – such as: clothes,
transport, and for the children, for the periods of lucidity (television,
play station, books, plays, dvd, musical -cd) and for their
health (medical equipment, computer, printing, fax, washing
machine, special plasters, special caps for the venous catheter,
heart- medicine......);
• We have supplied and will continue to supply to the formation
of the volunteers. The A.G.B.E. has always carried ahead the
speech of the formation of the volunteers to the aim to
guarantee a satisfactory assistance to the children in-patient
at the "Saint Spirito" hospital of Pescara . The course is
addressed to who wishes to become voluntary and to who already
works as volunteer for the organization. And it is finalized to
give an indispensable basic formation on psychology arguments,
pedagogic and medicine, arguments in order to work with the
children suffering from Onco -haematologic pathology and to
acquaint with them with competence, serenity and sensibility. In
the course of the encounter they come moreover supplied
practical indications on what means to make voluntary service,
in which timetables is possible to carry out it and other small
but important details in order to organize time and resources.
The course therefore is structured in a theoretical part,
finalized to the study and the understanding of the disease, and
to a part of practical experiences with moments of sharing and
planning of the voluntary service activities.
• We have promoted 3 scholarships in order to guarantee the
patients of the paediatric onco - haematology, the Paediatric
Surgery and the Transplants Unit of bony marrow, the presence of
one psychologist for everyone of the cited units;
• A scholarship promoted in order to guarantee the presence of a
social worker in the unit of Haematology;
• A scholarship promoted in order to guarantee the presence of a
sociologist in the unit transplants of bony marrow, to the aim
to help the families of the "Albania Plan" during the permanence
in Italy;
• We have beneficiated in 2006 of 3 volunteers of the Civil
Service through the plan of the Councillorship to the Social
Political of the Province of Pescara;
• We have ideated and put on a video library in the unit of
Paediatric Onco -haematology;
• We have been the main actor in the creation of the
Day-Hospital of Paediatric Onco-haematology and has obtained
from the town council of Termoli a contribution for one
scholarship to assign to a psychologist;
• We have organized recreational activities: One day with
"Prezzemolo" and the characters of Gardaland; Organizing
festivities of birthday for the children who find themselves
forced to pass such day in hospital; weekly presence of a wizard
or clown in unit; organizing course of do-it-yourself for the
creation of carnival masks, fishing contests;
• We have organized moments of familiar aggregation, as the
visit to the Harbour Master's Office of Pescara and the day of
games and entertainment in the town of Vicoli.
What we are doing:
• We guarantee the activity of psychological support to the
little patients of the Paediatric Onco-haematology, the
Paediatric Surgery and the Haematopoiesis Transplants Unit: The
presence of professional figures, such as psychologists is
essential for the "small patient" and is also indispensable for
the rest of the family. An aid that it begins in the unit, in
order then to continue in the Day Hospital that receives a group
of boys from 0 to 16 years that catch up the 25-30 daily
units..... to this number are to be considered the parents and
the brothers of the child patient. The psychologists have the
duty to establish a positive relationship, to take care of the
patients and their families showing human and professional
availabilities from the first encounter and introducing like
guide and reference in relation to the new situations that will
be introduced. Take care of the new patient, for our
psychologists, means also lend attention to the interpersonal
relations, parents, brothers, sisters since such figures
represent the intermediaries between the child-patient and the
external world; for such reason the observation of their
behaviours in the therapeutic process is fundamental. The job of
the psychologists doesn’t cease with the leaving of the child
from the hospital, as, once ended the therapeutic cycle in
hospital, the psychologist will continue to relate with the
children and their families and will be able to take care of
associate-recreational activities so that this difficult truth
from them lived leads to the physical health of the small
patients but also to the mental and affective health.
• We guarantee the activity of psychological support, through
the presence of one psychologist, in the paediatric Day-Hospital
of the Civil Hospital of Termoli;
• We guarantee Social welfare in the unit of Haematology in
order to start and to follow allowance assistance. The service
offered from the social worker is multifunctional since through
him we don’t want just carry on an informative action, but the
creation of a dialogue accompanied from the guarantee of their
rights. The scope is to give help to the procedures connected to
the questions of reimbursements, subsidies, civil invalidity
etc. and to create a net of solidarity between the families. It
supplies moreover help for bureaucratic problems within regional
and national range taking part and collaborating with the
sanitary commission, sanitary directions and general directions,
regional councillorships and direction inps(Italian institute
for allowances). Moreover the Agbe, for the social activity,
makes recourse to skilled lawyers and practical freelance to get
through "particularly Bureaucratic" problems, this for Italian
citizens as well as for foreigners.
• We guarantee the presence of two teachers in the Unit of
Paediatric Onco-haematology in the summer months in order to
offer moments of recreation during the stay in hospital (Plan
approved of from the Province of Pescara);
• The association provides to the lodging for 4 families from
Albania arrived in Italy in order to have the transplant of bony
marrow for their sons affected from Thalassaemia;
• Provides to the lodging of other families from outside
province and/or outside region who come to Pescara for the cure
of onco-haematological diseases;
• We use all our effort in order to guarantee the constant
presence of volunteers in the unit;
• We collaborate with the ACLI Patronage :one more aid for the
families, a free service in order "to slim" the bureaucracy. The
service is extended also to the unit of paediatric surgery and
paediatrics. From November a representative of the ACLI will be
weekly present in the Agbe’s office.
• we organize medical conventions: On 21st of April in Avezzano
and 7-8 September 2007 in Pescara we have carried out two
conventions (regional level for the one in Avezzano) and
(national level the one in Pescara) two conventions on the
Paediatric Onco-haematological in Abruzzi addressed to
"paediatric doctors and family doctors". Scope of the meetings
was to disclose to the family doctors and to the paediatrics
both the innovations emerged in the cure of the oncological and
haematological diseases in infancy and the help they can find in
our association as well as at the hospital "Saint Spirito" of
Pescara.
• We have promoted between the families recreation moments for
the children, such as: - Day at Guardialfiera; - Day of games
and entertainment at Gardaland funfair; - Day in open- air at
Asinomania ( play with and ride donkeys); - Festivity of the
"Trebbiatura" at Città Sant’Angelo; - soccer sporting event with
the former sick children; - Concerts and Theatrical shows.
What we are going to do:
• We shall guarantee the presence of the psychologists in the
units of Paediatric Onco-haematology, Paediatric Surgery and
UTIE of the Hospital "Saint Spirito" of Pescara through
scholarships;
• We shall guarantee the presence in the Unit of haematology of
the P.O. "Saint Spirito" of Pescara of a social worker, at the
disposition not only of the families with minors but of all the
families that for disease reasons come in the unit.
• Carry on the “Albania Plan”, thanks to the presence of a
sociologist, and therefore guarantee a reference figure,
constant in the time for those families that reach in Italy in
order to subject their own sons to the marrow transplant;
• Allow the families of the small patients affected from solid
diseases of the blood, leukaemia and tumours to reduce expenses
during the period of cure, through the possibility to lodge in
the structure "Thirty Hours" (the works of construction have
begun on 22nd October 2007) and will be ended and managed by our
association;
• Facilitate the reinstatement of the child previously in
hospital to school (considered that the time of cure for a child
affected from leukaemia is of two years). The return to school
is an important moment both for the child and for his family;
the child must reintegrate the external world with his, the
parents have to renounce the desire to be always with their
child and being able to control them. Therefore the degree of
quickness in facing this experience is very important; it is
important that the child can exercise a sure control in the
preparation for his coming back to school, he should be able to
specify which aspects of his condition would want that the staff
of the school and its companions knew. Moreover the fear that he
has remained behind regarding the companions in the preparation
can create a social ostracism which could take the child to
demand for repetitions before his coming back to school. It is
our interest to arrange the preparation of teaching to
facilitate the reinstatement of the child and the debit to the
class companions the opportunity to know the disease and to
express their perplexities before the child returns to school:
• Supply transport house-hospital-house service for the children
with affections from pathologies of blood or tumours and
psychological support (Plan approved from the Ministry of the
Political of Social Solidarity).
• Organize recreation and entertainments for the small patients,
their families and their friends.
At your disposal for any further information.
The President
Massimo Parenti
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