by Irina Ban, ICCCPO Regional Representative

From 22 to 24 of November Irina Ban and Lejla Kameric visited Croation parent groups in Zagreb.

Upon invitation by the parent groups in Croatia and on behalf of ICCCPO as well as „Zvončica”, I visited several parent organizations in Zagreb and also the main Children’s Hospital. Regarding the fact that Serbian children (if diagnosed with Neuroblastoma) periodically are going to Zagreb for MIBG treatment and Bosnian children have bone marrow transplantations in Zagreb, we thought that the Croatian parent groups could help and support these families. Mrs Lejla Kamerić, president of the Bosnian parents organization in Sarajevo, joined me with her colleagues as she wanted to visit several Bosnian families whose children are presently treated in Zagreb. To make our regional cooperation publically visible, we took with us three journalists and a cameraman from the Serbian National TV Station, the Local TV Station and the National Newspaper.

We had a two-hours meeting with the parent organization „Firefly”, the largest parent organization in Croatia, which is also an ICCCPO member. The meeting was held in their very nice office which is one minute walk from the hospital. At that occasion we also met the representative of the youngest parent organization „Phoenix”.

Each of us presented the situation in their own countries and talked about the different models of solving difficulties:

  • Palliative care of children – how it should be provided?
  • How to meet hospital requirements about hygiene and other issues
  • The rights of parents to be informed about the disease and the treatment protocols
  • How to deliver high-quality rehabilitation for survivors – (e.g. regional camps)
  • How to coordinate the treatment of children from Bosnia&Herzegovina and Serbia in Croatian hospitals
  • Psychosocial support for children, parents and medical staff
  • Communication with hospital and medical staff.

After the meeting, two other parent organizations “Love in Action” (ICCCPO member) and “Brave Child” arranged to visit the Children’s Hospital. We had an official reception and we were welcomed by the General Manager of the Hospital, the Head of Pediatrics, the Head of the Hemato-Oncology Ward, and a psychologist. They were very friendly and talked to us, specifically about how to be the best parent of a sick child and what they think that our goals should be.). Unfortunately, we were not permitted to visit the hemato-oncology ward. Instead they took us to the best equipped department, which really looked impressive.

At this meeting the importance of good relationship with both, parent groups and medical staff was emphasized; and we all have to learn a lot about communication, tolerance, compromises for the benefit of our children.

At the end, we concluded that we have to help each other. Here my role as ICCCPO regional representative was very important. The fact that Lejla Kamerić is our regional representative in the Parent-and-Patient Advocacy Council (PPAC) of the EU-funded project ENCCA, was also very helpful and both of us tried to convey to the Croatian parents the importance of good communication. The journalists did an excellent job, they attracted a lot of attention and so did the Croatian media representatives. This was very good, because there will be more presentations about this trip and about our regional work in our media.

Irina Ban

Belgrade, 28.11.2012.

Please click to enlarge.

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