The “Building a Future for Children from Romania” project (won in the international competition My Child Matters, funded with 35, 000 Euro and run by Sanofi Aventis together with UICC) started in 2007 and run in partnership with the Oncologic Institute of Bucharest.
It was created P.A.V.E.L. Resources and Services Center - a center for free information, social assistance, psychological, legal and health care consultancy for families with children with cancer.
This Center provided and provides a collection of information materials, brochures and medical publications and will publish new information materials; a database with information for cancer patients is being created; also provides a free Cancer Helpline (0 800 800 421) .
The Center and the Cancer Helpline for cancer patients and their families are the first and the single ones from Romania, till present.
In 2007 when the PAVEL Center was created, the background was:
Weekly, about 120 children with ages from 1 to 19 years were treated at Fundeni Clinical Institute (Pediatrics wards I and II, hematology), about 50 children were treated weekly at the Oncologic Institute (Pediatrics department) of Bucharest and about 50 children received treatment, weekly, at the Emergency Clinical Hospital M. S. Curie (Budimex), from Bucharest; the children were and are coming from a large area of the country.
- Lack of critical and specialized services on cancer matter such as: social and psychological
- Missing of good practices on cancer issues
- Insufficient connectivity amongst patients and professionals and institutions
Others:
Cancer was at that time was an important public health issue, being the second cause of death in Romania.
Ignorance, lack of information for the public, seconded by a limited commitment of the authorities in the field lead to a late diagnose of the disease and, subsequently, the treatment becomes extremely costly, aggressive, involving more sufferance both for the patient and his or her family.
Also, in almost 75% of the cases, healing was not possible any more. For this reason, the public perception was wrong, making out of cancer a merciless diagnosis, the equivalent of a death sentence.
Cancer was also an important cause of death for children or teenagers.
The types of cancer developed in a child are different than the one in an adult, as location, frequency, histological types and treatment, needing, therefore, a different approach. But, as in the adults’ case, early diagnose represents the essential premises for healing, being a clinically proved fact that the early diagnosed tumors in children can be cured in 80-90% of the cases. Treatment is though, a long-term one, in many cases the patient needing to be admitted in the hospital together with a family member.
Crashed by a terrible diagnosis, children and parents find themselves together in a critical situation they don’t know how to manage. Children are taken apart from their group of friends; in many cases, they can’t go to kindergarten or school or, if they go, they are treated somehow different. Above all these, they also have to deal with the pain or the inconveniences caused by the treatment and the fact that they spent so long in the hospital, confined to their beds, generates agitation, nervousness. Changes in their physical appearance also generate frustration. Parents don’t know how to cope with this situation, either emotionally or financially. They live through this traumatizing experience with no information concerning the disease, the proper treatment, the living conditions required in these cases or the legal rights of the children in this situation.
In the European Union, services for patients, especially those with an incurable or a long-term cure disease, take into account all the aspects dealing with the life quality or the social aspects involved. In Romania, there is no systemic, coherent thinking on approaching patients’ complex needs, medical policy restraining itself to providing medical assistance and treatment. Also, there was not inter-institutions cooperation on the problems of this type of patients.
By the nature of its field, PAVEL Association was the only organization that got itself involved in supporting families of children with cancer, who were receiving medical treatment in Bucharest (the onco and hematology pediatrics clinics from here were treating children and teenagers from a large area of Romania) and among the few NGOs working for cancer patients, in the country.
“Building the Future for the Children of Romania” project – main objectives:
O1. Diversification of the services and resources on the issue of children cancer for children, parents, professionals and NGOs by organizing and running a Resources and Service Centre
O2. Increase the awareness among parents, professionals and public in Romania on the prevention, treatment and services available in the field of children cancer.
O3. Reinforcement of the public-private institutional framework in order to promote the rights of children affected by cancer.
The project was expected to stimulate a change in the manner in which the Romanian parents, proffesionals and authorities respond to cancetr issues and to provide direct services through the Resources and Services Centre and practical guidance in designing local action plans to address this problem through partnership in Romania. It also raised awareness of the professionals and policy makers on the importance of acting in timely manner ways that complement and coordinate interventions addressing health problems in Romania. In addition, it increased the expertise and visibility and proved the effectiveness of coherent actions of the P.A.V.E.L. Association and its partner through Centre activities.
The general strategy of the project was based on the creation and consolidation of a Resource and Services Center, a partnership between a NGO, association of parents of children affected by cancer (PAVEL Association) and a public institution, a hospital (Oncologic Institute) and a good communication and dissemination of information on cancer prevention and treatment. This Center represents a milestone both for the parents of children with cancer who benefit from the services provided by the hospital, coming from all over the country, for the professionals in the field and for the public. The Center was and is run by a multi-disciplinary team, which set an example of coordination and cooperation in Romania on the issue of children with cancer.
The strategy of this project was based on the experience of the partner organizations in providing services to children with cancer and their families and also in promoting the early diagnose and treatment and in promoting the rights of this children, based especially on the fact that for years PAVEL Association has developed various lobby and advocacy actions for them. These constituted an advantage in creating partnerships with NGOs and also with public authorities and in promoting among the local authorities and among parents the existing facilities and opportunities in Romania, aiming to a full access of children with cancer to various health, education and social services.
Projects on-going in 2007:
1. “Building a Future for Children from Romania” project started in 2007 and run in partnership with the Oncologic Institute of Bucharest. It was created "P.A.V.E.L. Resources and Services Center" - a center for free information, social assistance, psychological, legal and health care consultancy for families with children with cancer. This center provided a collection of information materials, brochures and medical publications and published new information materials; a database with information for cancer patients is being created; also provides a free Cancer Help Line (0 800 800 421) .
2. “P.A.V.E.L. Playrooms" (playtherapy in hospitals, for children with cancer) at the onco - pediatrics wards of the hospitals: M.S.Curie (Budimex) and Oncologic Institute „Prof. Dr. Al. Trestioreanu”, Bucharest.
3. "P.A.V.E.L. Parents’ House" providing free housing, from 1998, for the parents that come with their children from other cities in Bucharest, for medical treatment or for medical check-ups. This is the first such of kind of 'House', from Romania.
4. Organizing events for ill or recovered children (festivities, trips, drawing contests and exhibitions, concerts, shows, etc.).
5. Help for families, at their request and based on medical recommendations, in contacting hospitals and clinics from Romania and from abroad. Campaigns and lobby for ill children. Advocacy.
6. Improving the living and treatment conditions in hospitals, by obtaining donations and finding sponsors.
7. Material support in special situations, for families in desperate need (according to the material/financial resources of our organization).
8. Participation at national and international conferences, workshops and seminars, where we made a strong lobby for the Romanian children with cancer and we made useful contacts with other organizations, parents, doctors, companies.
Main achievements
- Supporting children, youth and their families either by direct services or organizing events
- Conducting 2007 survey to identify what the needs and expectations are from various groups: children/ youth, parents and professionals
- Improving medical facilities for better medical services, as: the Oncologic Institute (pediatrics department), the Children Hospital M. S. Curie (oncology department), the Children Hospital Dr. V. Gomoiu (intensive care) and Fundeni Clinical Institute (Pediatrics wards I and II, hematology).
The Association P.A.V.E.L. has participated in 2004 - 2005, in a fund-raising event in co-operation with the "Surprize, Surprize" show company and with the extraordinary contribution of Mrs. Andreea Marin, which took place on the Romanian television channel, TVR1, on the 11th of September 2004.
The fund - raising was done for the developing of the Romanian medical system, in order to realize the bone marrow transplant, for the cancer patients. All the funds were donated to the three Bone-marrow transplant departments, from Romania
- P.A.V.E.L. Association website has been assigned the SECOND PRIZE at the 2007 Cancer on the Internet Award and Mention of Honour competition. The award was recieved on 23 September, during the ESO Cancer on the Internet Observatory, with the Patient Forum during ECCO 14, from Barcelona, Spain.
The Cancer on the Internet Award and Mention of Honour is an original initiative of the European School of Oncology that is supported by the School’s private donors. The organisation and promotion of the Award was made possible through an unrestricted educational grant provided by Novartis Oncology, supporting member of the ESO programme Sharing Progress in Cancer Care.
- Through the agency of P.A.V.E.L. several institutions (hospitals, associations, orphanages, churches,.) and people received help consisting in medicines, furniture, prothesis, medical equipment, food, clothes, shoes, toys, etc
After one year of this project, what we accomplished so far?
- Organizing and launching P.A.V.E.L. Resources and Services Centre in partnership with the Oncologic Institute from Bucharest;
- Work on Centre’s methodology and policy manual, such as personnel, reporting, evaluation tools, and clients files and intervention procedures was initiated;
- Conducting 2007 survey to identify what the needs and expectations are from various groups: children/ youth, parents and professionals;
- Supporting 107 children or youth and their families by direct social and psychological services;
- Organizing a data-base and Cancer helpline (0800 800 421) launched on September 2007;
- On going organizing a library of up-to date resource materials;
- Participate in meetings and workshops with decision –makers, Romanian public officials, other NGOs for developing awareness;
- Continuing to provide critical and specialized services (social, psychological, helpline and resource library)
- Increase connectivity amongst patients, professionals and public and private institutions
- Promote full-package services to other Romanian NGOs and public institution for possible replication
- Increase access to specialized treatment and services
- Increase public and private participation on supporting the services for cancer patients
Since 2007, the activity of the Center diversified very much, adding more and more services, programs and activities. Since 2008, the services are acredited.
About these programs and activities, you may read more on http://www.asociatiapavel.ro/programs-and-projects.
In present, Association P.A.V.E.L. is one of the most involved organisation for children with cancer in Romania.
Appreciation for the activities of the organisation:
-The prize for the “Project of the Association with the greatest addressability”, Medica Festivity –III rd edition, 2011;
-The “Prize for the most Implicated Association of Patients”, at the Sanatatea TV Gala festivity, on December, 2014, 2012 and 2008;
-September 23, 2007, the P.A.V.E.L. website received the second prize during "2007 Cancer on the Internet Award and Mention of Honour", event organised by the European School of Oncology and Novartis, the Pharmaceutical Company. The prize award took place during the conference "ESO Cancer on the Internet Observatory" in Barcelona, Spain.
-Various presentations in mass-media on the activities P.A.V.E.L. Association undergoes.