Joan began her talk by asking the audience ‘How do we commit resources to quality palliative care when most children with life-limiting conditions have little or no access to any palliative care?’
Using the WHO definition of children’s palliative care she described how children’s palliative care needs are unique and differ from those of adults. For example, children’s palliative care is applicable in over 400 different diagnoses. Children with life limiting conditions still want the chance to be children. They also have the right to play and to socialise and to have the possibility to continue their education.
What is happening in children’s palliative care in Africa?
Joan emphasised that while the need is great and there are many gaps, things are happening in children’s palliative care on the continent. She listed the following examples:
- There are many excellent models of care in Africa, which can be adapted for the provision of care around the continent.
- The APCA standards of care are excellent and delegates were encouraged to download these from the APCA website.
- The paediatric Palliative Outcome Scale (POS) is in the final stages of completion and will be a welcome addition to materials available in Africa.
- ICPCN and UNICEF are collaborating in a research project to assess the need for children’s palliative care in Africa.
- FHSSA and ICPCN are looking at what elements indicate an effective model for the provision of children’s palliative care
- Malawi is included in the two country project to upscale children’s palliative care in Malawi and India
What does Africa have?
‘We almost have it all,’ says Joan. “The ICPCN Cape Town Declaration (2009) states that while disparities exist within and between countries and services, ‘collectively we are a rich resource of knowledge, skill and judgement and we commit to share all that we can’ to achieve the joint vision of the provision of quality palliative care for all children. If we collaborated, we could put together a wonderful African package for children’s palliative care,” she said.
This package would include:
- Methodology to identify the need in country
- Guideline to developing an effective model of palliative care for children – local and national
- APCA Standards of Palliative Care for Children
- APCA Paediatric POS
- E-Learning modules and a list of programmes & practitioners for clinical placement
- Textbook of Palliative Care for Children in Africa
Referring to the theme of the conference, ‘the net effect’ together in Africa Joan reminded delegates that collectively we have the knowledge, the people, the programmes, the resources and the will to stop the suffering of children.
Her final challenge:
If we don’t do it – who will?
If we don’t do it now – when will we do it?
For the children – there is only now.
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