The day began with a warm welcome by Dr Poh Heng Chong, Deputy Director of Star PALS at HCA Hospice Care, and Joan Marston, Chief Executive of the ICPCN.
The first session of the workshop addressed the importance of marketing your service or organisation as well as children’s palliative care. Sue Boucher, Director of Communications at the ICPCN, highlighted the importance of marketing as an advocacy tool. She discussed the advantages of marketing to the community through a website and ehospice. Lorna Sithole, ICPCN’s Media and Marketing Officer then gave an enlightening discussion on social media and how it can be used to raise awareness.
Dr Marianne Phillips who is the Consultant Paediatric and Adolescent Oncologist and Palliative Care Specialist at the Princess Margaret Hospital for children took to the stage to discuss ways to persuade colleagues of the value of children’s palliative care.
The workshop then went into a session addressing the building and maintaining of children’s palliative care programmes when resources are limited. This discussion was lead by three representatives from countries experiencing a great lack of resources, namely Dr Mary Ann Muckaden, from India, who is the Head of Palliative Medicine at the Tata Memorial Hospital, Dr IssarangNuchprayoon from Thailand and Busi Nkosi from South Africa. Dr Muckaden emphasized the significance of advocacy, “it is important for us to get out of our cocoons and advocate for children’s palliative care”.
After lunch the workshop continued with an educational session about the holistic management of refractory seizures, spasms and dystonias. Dr Chong lead the discussion on refractory seizures. He pointed out that in a paediatric palliative care context these seizures may result from primary neurological illness, disease progression, intercurrent systematic illness/ metabolic derangement and new onset pain. Dr Ross Drake then took to the floor to discuss spasms and dystonia. “Dystonia reduction doesn’t always equate to improvements in function but quality of life, comfort and care burden issues can be improved”, closing words by Dr Drake.
The final session of the day addressed bereavement in paediatric palliative care. This informative session was lead by Ms Chee Wai Yae who discussed grieving from a parents perspective. She related the heart wrenching and emotional story of a mother who recently lost her daughter. She emphasized the importance of grieving saying, “the only cure for grief is to grieve”. Dr Amy Chow addressed the grieving of professionals and how they often experience feelings of powerlessness, doubt, guilt, failure and sadness. She closed by assuring professionals that “professional grief is common and normal”.
The objective of raising awareness of children’s palliative care amongst the Asia Pacific professionals was met. The day was a huge success and a great way to kick off the APHC2015.
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