Organised by the Open Society Foundations (OSF) the International Children’s Palliative Care Network (ICPCN) and the Fondazione Maruzza Lefebvre DoOvidio Onlus, a meeting was arranged between representatives of funders who have in the past contributed substantially to the development of children’s palliative care internationally, along with those who were new to the cause and international leaders in the field of children’s palliative care.
After a warm welcome to the meeting by Mary Callaway and Dr Kathy Foley from OSF and Sylvia Lefebvre D’Ovidio from the Maruzza Foundation, Joan Marston of ICPCN gave an inspirational overview of the worldwide development of palliative care for children. During her address Joan related the story of a visit she had recently made to present training to medical personnel at a hospital in Songea – one of the more remote areas of Tanzania. During this visit she met a man known as an ‘expert patient’ who spends his days supporting and encouraging other patients and children for very little financial recompense but with great passion and dedication. Joan told the audience that a week after her visit she received a text from this man asking the simple question: “You are the Chief Executive of the ICPCN. So what are you doing for the children of Songea?” She asked participants to use this question to focus their minds on the purpose of the meeting. What are we doing to make sure that the children of Songea and every other remote village, town and city worldwide, have access to palliative care should they need it.
Participants were given an interesting insight into how funders’ perspectives have helped to shape the field of children’s palliative care. Olivia Dix from The Diana, Princess of Wales Memorial Fund and Jo Ecclestone-Ford from The True Colours Trust spoke of the importance of both consultation and collaboration between funders and between funders and the organisations they fund. Both emphasised the value of strategic funding which targets policy development and building capacity. Sylvia Lefebvre spoke of the work of the Maruzza Foundation in securing the approval of the Italian Law n38/2010 which ensures the legal right of every child in Italy to access child specific (0-17years) palliative care. It also states that each of the Italian regions must implement a network for the delivery of paediatric palliative care and pain management. Syliva also spoke of the importance of having a credible champion for children’s palliative care within the country, which Italy does in the person of Dr Franca Bernini, as well as support from within the Ministry of Health,
Regional representatives were given the opportunity to present examples of successful programmes from around the world. Perspectives from Latin America, Europe, Africa and Asia were presented. Participants then heard from experts on policy development, access to essential drugs, educational needs of healthcare professionals and service delivery development. The day ended with workshopping sessions which looked at how best to move the agenda of children’s palliative care forward within the following four areas:
- Policy development
- Access to Essential Medicines
- Education
- Service Development
The day ended with a report back session from each of the groups but was summed up extremely well in comment from Professor Myra Bluebond-Langner that the day had made everyone more aware of the realities that the field faces. On education she encouraged participants to look at developing palliative care training within other specialities such as oncology and cardiology. She cautioned that the solutions the group come up with in one country cannot always be generalised to all but that the day highlighted the importance of partnerships with funders and professionals. She went on to say, “The child and the family needs to be at the centre of what we do. However, our models often serve the professionals, the policies and governments. That is why we should always remind ourselves “What are we doing for the children of ….?”
A full report on this meeting will be made available on the ICPCN website within the next two weeks. Presentations and various handouts from the meeting can be viewed and downloaded from http://health.accel-it.lt/en/seminar/pediatric_palliative_care_funders_meeting_/
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