Pita Kuning going Palliative Care, focuses on Psycho-Social based activities.
After 3 months trial practices from October to December 2016, also show casing pur new service to media and donors on January 2017 we tried to review on the learnings we have up til now.
Information, knowledge, lessons, each case we found have let us fill in and also improve the structure of our service formulation.
However we have still a lot to learn, absolutely, nevertheless there are concrete cause and effect all in written. To find solutions of problems and how to handle them, what to do, why do we need protocols and operational supporting activities also division of support will lead to so many things, including the operational cost needed.
Again, knowledge management. How it is important for a single method taken from the learnings of 5 chosen child, within 3 months assisting activities and distribution fund supports. My hope, within time it will improve and progress with the same objective, to improve the quality of life of children with cancer and their family.
After that 3 months learning, we then know and understand more expecially on children with cancer, nursing and care taking. Based on KPKN childhood cancer countermeasures,
we have found and finally understood that all these times what we have done through our activities are actually building efforts and how important palliative care was. The understanding back then was not yet been educated. And the comprehension of what is Palliative Care is also misunderstood.
Palliative Care is not only for cancer patient that are in later stage but needed right from the start. Palliative Care cannot be replaced by any medical treatment but as an aspect that completes each other, even needed after the patient is passed away for the family that has impacted.
Palliative Care is a series of efforts in trying to reduce the pain, trying to help accept the fact of having cancer with patient and their family, trying to help overcome the impact made by the disease in the end to improve the quality of life for the child with cancer and their family.
To improve the quality of life for children with cancer and their family as our main goal meaning, we aim for family productivity. When a member of the family is sick or could not perform normally it usually impact the the balance of the family’s daily routine. If many family are defected their ability to perform in their daily lives, hence the quality of life a community or a region as result there will be in a limp. Trying to seek the best solution comes from a bigger dream. We want to be a part of a better Indonesia.
For us finding the alignment of our main purpose and our background history as well as our need to grow was eventually taken from the 3 months trial activities. It was indeed a relief.
Of course by going palliative there will be some adjustments needed for the organisation. But wherever we are, working anywhere, there are no guarantee on what changes would might had happen, at anytime. For me, the most important as I am still at my service, is the main purpose why I am here in the first place. And therefore the main objective has not changed. Still within and align with the promise, the agreement for this organisation to have a strong platform, to become better and the have the opportunity to help more children with cancer in Indonesia.
Pandji Pragiwaksono, Founder and Council of Pita Kuning once said, “we, still have many opportunities and have the ability to be flexible in our own lives. But, the children we are helping do not. Always give space to grow within this organisation. Solely and purposely for the children.”
For Pita Kuning we still need to do so many things in order to get the ideal Palliative Care based services. Through our skills and our capacity.
We then started to joint partnership and try to affiliate with a lot of parties so that we can rise above, be strong and steady to give the best that we can do of each year’s goals.
In managing our service combine both on volunteering and hired workers, the supporting cost we need also would be an important aspect.
We also need to partner and educate the awareness those who wants to join together for the same cause, helping children with cancer. My hope that Pita Kuning could be a part of the larger ecosystem of childhood cancer countermeasures in Indonesia. and also can be able to partner with anyone who share the same mission.
Currently, I am proud that Pita Kuning has started to collaborate with other foundations that has the same understanding on the importance of palliative care.
Rachel House Indonesia and Rumah Harapan Valencia are 2 foundation that has the same mission as Pita Kuning.
Rachel House Indonesia mission is to provide palliative care for children living with life-limiting conditions, allowing them to live with joy and dignity in a non-discriminatory, safe and loving environment. Rachel House helps children in Indonesia with AIDS and Cancer from underprivileged families through medical support that was referred by doctors. It was a fortunate coincidence, that the new CEO of Rachel House, mba Kartika Kurnisari is our dear friend from Putera Sampoerna Foundation.
Hand in hand we work together to help children with cancer. Now together with Rachel House from the medical side and Pita Kuning from the psycho-social side. Starting from early assessment up til bereavement we support palliative care needs for each of our child with cancer and their family. We also have amonthly monitoring meetings to review progress and learn the needs ultimately to have a good management case system and could help each other fill in the gap in support to help those in our care, at Jabodetabek.
As with Rumah Harapan Valencia we agreed to take care together those child with cancer within the pyscho-social activities. Mba Silly invited us to continue our support to other cities in Indonesia. Pray to make that happen.
Small Note : In the social activist world, it is never impossible to work together. What we are doing is to help those in needs. Whoever is lacking will be supported by others. And of course the spirit of competition will never die. Ramya Prajna, a social impact enthusiast and educator says, competition within the social initiative world will push productivity and therefore makes the industry becomes lively and more exciting.
To manage well, we also started to learn on the true role of Social Worker. We met with an expert of Social Worker, mba Nurul Eka Hermawan . Mba Eka, as she is called, as work and a consultant for the Social Department and International institution for many years. Through her experience and guidance we started to recruit Social Worker to be our case manager for our children we have at Pita Kuning. They also become the bridge to each multidiscipline parties of Palliative Care, according to the needs of each child. They are also the coordinator of volunteers as each group of volunteers support each appointed child with cancer and their family in a group of 3-5 by weekly assisting programs.
Pita Kuning team with Mba Nurul Eka (expert on Social Worker) and mba Ita D Azly (Family Psychologist)
Currently, Pita Kuning has 3 Social Worker that are dedicated to be the coordinator to volunteers and communities. They are true millennials. Isn’t that incredible ?
I do hope, each child gets a continuance story through their case management that can be shared. To be used as a monitoring learning or a proof of concept for us every case always has a goal objective to reach both psycho-socially.
And in the end, I truly believe the impact of what we do will make a full circle of hope for the sustainability of Pita Kuning as part of the childhood cancer countermeasures ecosystem. All for the best in doing good together.
And that is why it is time for me to let go.
Tyas is now Partner Consultant and Trainer on Digital and Social Media at Bangwin Consulting, Freelancer, Writer/Blogger, Podcaster. For project enquiries, firstname.lastname@example.org