By Anthony Penn, UK, Chairperson, the ICCCPO Survivors’ group
The first ICCCPO survivors’ meeting was held in Luxembourg in September 2001. Prior to this, childhood cancer survivors attended the same meeting as the parents and health workers. Although the ICCCPO parents’ meeting was interesting and many of the issues pertinent to us, it was recognised that our needs as survivors differed from those of parents, and with the support of the ICCCPO committee and guidance of Prof. Mark Chesler (Parent of a long term survivor (LTS) of childhood cancer and ICCCPO Board member), the ICCCPO survivors meeting was initiated.
Our intention was to create a forum for survivors from all over the world to share their experiences in a friendly, unthreatening environment. The first meeting focused on sharing individual experiences while undergoing treatment for cancer. We have now evolved into an organisation primarily concerned with issues faced by long-term childhood cancer survivors, and more particularly, long-term survivor groups. This was reflected in two key sessions at the 2003 meeting in Barretstown, Dublin: “Long term follow up of children with cancer”, where we discussed how, where and by whom we would like to be followed up, and “How to set up a cancer survivors group in your own country”. This was the most popular session, and we will continue to focus on this fundamental topic in future meetings. In order to facilitate the aforementioned sessions, experts in their respective field presented their thoughts on the topics, and we then discussed them in small groups. This again differed from previous meetings at which only survivors and Mark Chesler were present.
Our meetings are not all hard work! We also have a lot of fun. It’s a great place to meet new friends and have a good time. Saturday afternoon was spent practising archery and wall climbing, and the Irish Ceili dancing night, though rather tiring, was especially entertaining.
21 survivors and 2 siblings from 14 countries attended the Barretstown 2003 childhood cancer survivors meeting, and the age of survivors ranged from 16 to 29 years. There were representatives from Western and Eastern Europe, North America, New Zealand and Asia. Most survivors were representatives of their own national or regional childhood cancer groups, or were interested in starting up new survivor groups.
Here is our mission statement and goals as defined at the 2003 ICCCPO survivors group meeting:
Young adult cancer survivors brought together to share resources and experiences in order to support and develop childhood cancer survivor organisations everywhere in the world.
Goals of ICCCPO Survivor’s Group
- Support the implementation and development process of national and local survivor groups.
- Establish an international network that provides information and resources for survivor groups.
- Connect with relevant professionals to provide information on important issues faced by childhood cancer survivors.
- Energise and inspire cancer survivors worldwide.
The ICCCPO Survivor’s Executive Committee
In order to preserve continuity and ensure the success of future meetings, an executive committee has been formed, consisting of six survivors who will be working together to help plan the next meeting in Oslo in 2004. The ICCCPO survivors Committee members:
Chairperson: Dr Anthony Penn (UK), Survivor for 16 years
- Previous Executive member of CHOC (South African childhood cancer parents organisation)
- Has been involved in all three ICCCPO survivors meetings
- Medical Doctor at Frenchay Hospital, Bristol, UK.
Vice Chairperson: Prudence Walker (New Zealand), Survivor for 4 years
- President of CanTeen – The New Zealand Teenage Cancer Patients Society
- Studying B.Health Science (Rehabilitation)
Secretary: Alex Brownsdon (UK), for 17 years
- Active member of TOPS (Teenage Oncology Patients Support, UK)
- 2nd ICCCPO survivors meeting
- 3rd year of B.Science in Psychology
Communications Liaison: Eva Coenen (Netherlands), Survivor for 9 years
- Actively involved in organising survivor activities in conjunction with VOKK (Dutch Childhood Parent Organisation)
- Has been involved in all three ICCCPO survivors meetings
- 4th year Medical Student
ICCCPO Liaison: Nicole Bruton (Canada), Survivor for 20 years
- Active in the Alberta Kids.
- B.Arts (Psychology), Currently studying towards B.Education
Developing World Representative: Aditya Soelistyo (Indonesia), Survivor for 5 yrs
- Eager to establish survivor’s organisation in Indonesia
- Studying B. Information Technology
The survivors’ opinions on long term follow up were presented at the International Society of Paediatric Oncology (SIOP) 2003 Annual Conference in Cairo, in the session: “Long- term follow-up guidelines: Research initiatives in risk-based screening of childhood cancer survivors.” The talk was extremely well received, and the response from the doctors present was overwhelming. Doctors and other decision makers are clearly interested in what we, as survivors have to say about our care, which is very encouraging for our future as advocates for childhood cancer survivors all over the world.
An article detailing the activities of the ICCCPO survivors group will be published in a special international issue of Contact, a magazine for families of children and young people with cancer to coincide with the International Childhood Cancer Day. on 15th February 2004. The international issue will be translated into several key languages and distributed globally through ICCCPO and SIOP.
Feedback, Barretstown 2003
Overall we all had a great time, met lots of new people and learnt a lot about how childhood cancer groups work in different countries. Some of the comments made in the feedback questionnaire illustrate this:
“Meeting new people and making friends with other survivors from other countries – gaining multicultural awareness.”
“Finding out and sharing experiences – we will be able to use what we have learnt to help others.”
“Walking away feeling excited for future survivors.”
“Everything was great!”
“This meeting was even better than I expected and I gained a lot from it.”
The next ICCCPO survivors meeting will be held in September 2004, in Oslo, Norway, and we are looking forward to continue sharing ideas and experiences with other childhood cancer survivors all around the world.
Anthony Penn, Chairperson, the ICCCPO Survivors’ group, firstname.lastname@example.org