The Association P.A.V.E.L. ('Primind Ajutor, Viata Este Luminoasa', which stands for 'Getting Help, Life Is Bright') is an organisation of parents whose children have cancer or leukaemia, from Romania. P.A.V.E.L. association came into life on August 1995 and was legalised on May 1996. It is a humanitarian association of private law, non-profit, non- governmental and independent of private or governmental institutions. Association P.A.V.E.L. is member of ICCCPO, UICC, ECPC, IAPO, EUROCHILD and associate member of SIOPE.
The aim of the organization The Association P.A.V.E.L. aims to educate, to offer moral, psychological, informative, material and legal help and to advocate for families of the ill children and youngsters, survivors and health professionals from over the country.
Beneficiars Children with cancer, leukemia or grave anemia Families of children with cancer, leukemia or grave anemia The people who survive after a childhood cancer Specialists from onco – pediatrics Public and private institutions, related to the cancer field, care, education or rights for people with cancer
Obiectives 1.Diversification of the resources for parents, professionals, organizations and public, on the issue of children cancer and facility of a good communication 2.Increase of the information and awareness level of parents, professionals and public in Romania on the prevention, treatment and services available in the field of children cancer. 3.Reinforcement of the public-private institutional framework and sensitizing of the professionals, authorities and public, in order to observe and promote the rights of the child with cancer. 4.Increasing the access for the ill children at an adequate treatment and according to the most updated. 5.Supporting for the families with financial problems, in having care for their ill child. 6.Early diagnosing of the cancer, at the ill child and decreasing of the number of children, diagnosed with advanced forms of cancer.
Why such an association? There are major difficulties in the paediatric oncology, existing a high percent of cancer patience. In hospitals, these are referred to the accurate diagnose and to the treatment procedures of the young patients with cancer. Some of them are:
- very often insufficient of medicament supplies to correctly perform western chemotherapy protocols; - a poor supportive therapy due to low standard blood products, for instance; - shortage of medical equipment, instruments for analyses, modern apparatus.
The standard of living is low. Yet, there are a lot of doctors and medical personal well educated, trained and who try heroically in these conditions to save the life of the small patients.
Children with cancer or leukaemia, in Romania, don't have the same chances for cure as children in better equipped countries. Here, the recovery rate of these lethal illnesses is very low, around of 20%. How much pain is hiding behind this number?
Other reasons to exist P.A.V.E.L. The parents are confronting with:
- lack of knowledge about the respective disease, its cause, its characteristic or about the necessary or possible treatment offered by modern medicine; - lack of simple and accessible materials (books, magazines) to explain such problems; - parents isolation, they are generally cut off from others, without being able to share their own feelings, hopes or fears; - lack of informing the parents about their legal rights, about the community aid they can make use of.
How we are working? - Working together with public, non-governmental agencies and private companies - Self-representation and advocacy - Promoting models and international practices - Affiliate with Federations and Umbrella Organizations
What we do?
1. “Building a Future for Children from Romania” project (won in the international competition My Child Matters) 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 will provide 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 Help Line (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.
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.
Future Projects P.A.V.E.L. Camp for children ill of cancer (SMILES on WHEELES)
We wish to buy a small house with garden, for a camp (or better said, a respite home), in a countryside area, but close by a medical center, where the ill children together with their family can spend a nice holiday. The costs would be much smaller comparing with other camps for the ill children, from abroad. For house and garden, the cost could be between 20,000 and 40,000 Euro (in 2006) and the costs for running the camp, could be around of 5,000 Euro /year (the rest, being covered by volunteers' work). Also, we wish to buy a mini-bus for children, for trips, for weekend events and for transporting (as an ambulance) very ill children or who died (of poor families) - at home, in province.
Activities for children and teenagers
Emotional support, educational and entertainment activities
The long of the years we have developed different activites of entertainment (trips, drawings exhibitons, Easter, Christmas and other celebrations activities developed in the oncological / hematological wards), playtherapy and educational activities in order to help children and families cope with the challenges they face daily. We noticed the following benefits:
Reduced pain and distress A reduction in the fear and isolation of a prolonged illness A greater willingness to return for treatment An increased sense of peer support Increased knowledge and sense of responsibility for managing disease Much needed distraction from the challenges that accompany their illness Increased ability to cope with their disease
a) Trips with ill children We try as best as possible to give to the children a better quality of life to make them strong and fight themselves for the future. Family activities and outings, offered regularly to give families a chance to have fun together away from the hospital so they can relax, regroup and return home with a renewed sense of strength and hope. The events also forge connections between families struggling with similar issues to combat isolation.
b) Exhibitions with drawings of the ill children
c) Playrooms in hospitals (permanent program) The playrooms are designed to ease the loneliness, fear and boredom that accompany long hospital stays. They provide children with an inviting place to play, relax and connect. Additionally, we brought fun-filled special events involving musicians, clowns and other entertainers to pediatric hospital patients - even those who are bedridden - to provide a morale boost and important social interaction. Also, we tried to offer emotional support to children and parents and to help the children with educational activities, for easier reintegration in their school program.
d) Organising festivities for children in hospitals
What we accomplish so far?
- 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 are 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.
Main challenges - Compensate for lack of critical and specialized services (social, psychological) - Increase the connectivity amongst patients, public and private institutions - Build up good practices and complex centres - Upgrade the professional skills and knowledge of all professionals working in cancer field (or needed in this field) - Increase access to medical treatment - Increase public and private participation on financially supporting the services for patients
For donations in money, for the projects of the Association P.A.V.E.L., you can help paying:
- into the accounts of P.A.V.E.L. Association, from the bank BANCPOST S.A., branch TITAN, sector 3, Bucuresti, Romania
ROL: RO81 BPOS 7100 3031 332R OL01 USD: RO92 BPOS 7100 3031 332U SD01 EURO:RO48 BPOS 7100 3031 332E UR01
- on our websites, you can read about other ways to help
Our websites are: www.asociatiapavel.ro www.asociatiapavel.home.ro www.active.com/donate/asociatiaPAVEL