Travel date: May 18, 2016
Name of Meeting/Event/Activity: 2nd ICPCN Conference: Children\'s Palliative Care
Origin: Dhaka, Bangladesh / Destination: Buenos Aires, Argentina
Individually it was a great opportunity for me to meet with the leaders of Palliative care .All the sessions were very informative and the gaining of knowledge in the conference has helped me to run my organization more effectively. There I Co-chaired one of the session “Family and volunteers perspectives”. From one of a discussant of my session this time I have learnt that trained animals can be used as a volunteer to give happiness to the sick children. In western world there are many volunteers who come forward to give time for the sick children and their thinking are to comfort the children anyway possible. I was thinking that volunteers like Frankie is very solacing as the palliative children are sick and cannot exert themselves to go outside the room to play thus playing with the dog and other animals and getting the time of them (the volunteers) are very comforting. The presentation was fascinating and I wondered whether we would be in a position to develop volunteers like Frankie in our country where human volunteers are also very difficult to motivate. The other presentation was of Diederik Lohman. The mental condition of the parents when their two children died one died of not knowing the diseases and without Palliative Care and the other was how Palliative Care was given and then the child died. The theme of the presentation of the two sisters reflects the quality of life for palliative care. This story will help the workers to be more careful and advocate the needs of Palliative Care to the parents in our foundation.
I have got the chance to meet with different organizational members and learnt about their activities. We have exchanged our views and discussed about developing scope of cooperation and collaboration. Based on the knowledge of interactions with other participants we have decided to focus on our own capacity building through networking and developing technical support program with ICPCN. We have already exchanged our this thinking with Joan Marston, Prof. Julia Dowling and Prof. Mary Ann Muckaden.
As a recipient of IAHPC Travelling Scholarship I got the opportunity to attend the ICPCN conference. My sincere thanks for the scholarship. The scholarship covered the expenses of my air ticket from Bangladesh to Argentina but I had to organize my hotel accommodation and local transportation which was also very costly and not in affordable range of participants like us from third world countries. While participating in the programme, I came to know that a group of participants were housed in an apartment and as such sharing the cost of accommodation and local transportation came under affordable range of every participant in that group. Under the same concept, If IAHPC arranges accommodation and local transportation of group of participants and offers the scholarship to cover cost of the air ticket plus local facility within a package it might be helpful.
ASHIC (A Shelter for helpless ill children) started its journey in 1994 after the death of our son Ashiq Husain Choudhury in 1993.During his treatment in London , the Choudhury family experienced the support services rendered by the community and friends to keep the affected family comfortable at the distressed situation. Based on the experience, ASHIC (Foundation for Childhood Cancer) was established in 1994.From our experience we find that the scope of palliative care covers the total spectrum of disease management, physical care, psychosocial care, spiritual care, end of life care bereavement care etc. Though the palliative support starts from the beginning of diagnosis of a patient, at the initial stage diseases management with the aim for cure is the priority but with the passage of time as disease progresses and the chances for cure reduces, palliative care becomes more and more important where other aspects of the care in the spectrum come into priority. From 1994 ASHIC Support services were aimed at providing various supports to children and their family to ensure the continuity of treatment for cure. But based on the experience of success rate of cure and the end of life miserable situation, ASHIC started the palliative care unit (PCU) in 2006 which was identified by Asia Pacific Hospice Network (APHN) and Lien Foundation of Singapore as the first such facility in Asia Pacific region. In 2006 after start of PCU ASHIC found: 1) Doctors concept is oriented to cure and cure. It was difficult to make them hear or motivate them to refer patient to end of life palliative care. 2) Because of lack of awareness, the concept of Palliative Care was not also acceptable to society/Parents. 3) There were not many health service providers who had knowledge on palliative care. 4) No pediatric palliative care component is in national policy. 5) Introducing the concept under the leadership of govt. hospitals was difficult. 6) Opioid use was restricted to a few govt. hospitals only for adults.