Sadie Cutland, member of the Executive Committee, gives a report of the Third Continental
Meeting of the International Society of Paediatric Oncology (SIOP) in Africa and the
Parents Meeting that was held back to back with this meeting. The events were held in
Rabat, the capital city of the Kingdom of Morocco, 18th – 23rd May l998 under the
patronage of his Majesty the King Hassan II.
The themes of the scientific meeting were: epidemiology of childhood cancer in Africa, non Hodgkin’s lymphoma, and nephroblastoma. During the week there was a Meeting of Associations of Parents and Friends of Children with Cancer, which covered the topics of “Paediatric oncology in developing countries”; “Perception of the diagnosis and the disease”; and “The role of support groups”. In addition, there was a course run by the European School of Oncology (French speaking), which focused on: Hodgkin’s and non-Hodgkin’s lymphoma; acute leukaemia’s; and supportive care.
Overall some 200 delegates attended the three conferences during the week, from: Kenya, Cameroon, Egypt, Morocco, Tunisia, Senegal, Malawi, Italy, Ivory Coast, Algeria, Congo, United Kingdom, France, South Africa, Tanzania, Zimbabwe, Uganda, Poland, Norway, Netherlands, Switzerland, United States of America and Khazakstan.
Her Royal Highness Princess Lalla Meryem (Patron of L’Avenir) was present at the opening of the SIOP conference. The welcoming addresses were delivered by SMOP President; SIOP President; Continental SIOP President; ICCCPO Representative; Minister of Health; and Minister of Social Affairs.
Morocco has an estimated population of 27 million, 10 million of whom are under 15 years of age. The languages are French / Arabic / English. It is a 99% Muslim country. There are only two Children’s oncology treatment centres – namely Rabat and Casablanca.
It was indeed a great honour for me to attend and represent ICCCPO. I was hosted most graciously by l’Avenir, the Association of Parents and Friends of Children with Cancer, which is based in Rabat. I learned a great deal, and had the joy of staying in the Parent House Maison de l’Avenir.
L’Avenir Parent House
This house provides accommodation for parents and family. It is most spacious and restful, has 24 bedrooms, and is a four-story building. The ground level has the kitchen, dining room, laundry facility, and storage area as well as garaging for motorised transport. The first floor houses the head office of the Parent Association L’Avenir together with boardroom, meeting rooms, and playroom where the cupboards are full of toys. Solar heating provides hot water and every bedroom had its own shower, toilet and handbasin. L’Avenir raises money by sale of carpet masterpieces, gala evenings, and greeting cards. They also receive regular subsidy from certain donors/societies. They have an annual ‘Open day” of the house to create awareness of present activities conducted there and of the project. The house is also used for the Parent association L’Avenir’s general assembly and meetings on a regular basis. Plans are to run literacy courses and look at the long-term survival issues.
The Parent Conference
This was held over 1½ days, on 19th/20th May l998, and was attended by approximately 50 delegates who were mostly friends of the parents association and some parents. A visit to the Children’s hospital in Rabat was organised on the 20th May.
There were presentations by participating groups namely: ICCCPO; ALSAC (American Lebanese Syrian Associated Charities), a large USA based health care charity; and AGIR (Association de Soutien Aux Malades Du Sang), which supports adult haematology and paediatric haematology at the hospital in Casablanca, Morocco. The organisations elaborated on the work being done, their experiences and future developments. AGIR were fundraising to establish a bone marrow centre in Casablanca.
Topics covered included the work of the parent support groups, recruitment and maintaining volunteer service, collection of funds, how cancer effects the family and the socio-cultural impact, and quality of life.
There are great difficulties in getting drugs/medication to treat children in Morocco.
I was fascinated by the presentation on collecting data from the child with cancer and how this in turn gave the child the medium to “explain to Granny” what was going on.
Drawings were very important to the child and children enjoy documenting “their illness”.
SIOP in Africa Conference.
I only was able to attend the opening sessions of this medical conference. The main points that struck me were to do with the overall situation of cancer in children in Africa. It is estimated that there are approximately 650 million people in Africa; therefore we should have 50,000 children in Africa with Cancer. Where are they? They are either not aware they have cancer, or they are aware and cannot be treated because of lack of experts, inadequate resources, drugs, equipment and data. It was stressed that there was a great need to establish a cancer registry for the whole of Africa. This means better communications between oncologists/paediatricians, promoting joint projects, twinning of services and training.
A lot of work needs to get done on the African Continent and I am at present working on the SIOP 2000 Meeting which will be held in South Africa in May 2000. This will be the 4th Continental Meeting previous meetings were held in South Africa 94, Egypt 96 and now Morocco 98.
I found there was a great hunger for information about parent support groups from many of the oncologists attending and have started a database.