Palliative Care learnings with University of Philippines Diliman

Happy to share my experience with the University of Philippines Diliman (dated on 11th March 2018) on establishing Palliative Care during my time at Pita Kuning.

One day, I was contacted by someone who works for Dompet Dhuafa Republica . Apparently they had read and learn through all my series of blog post on Tyas Social Project (read : English version or Bahasa Indonesia version). Tyas Social Project is about the process on how we implement Pita Kuning new strategy service focuses on Psycho-Social activities to meet the needs of Palliative Care for children with cancer from underprivileged families. It became a reference for their acquaintance from University of Philippines about Palliative Care.

Palliative care is still very new for some so the understanding and also how to implement into an actual practice are very rare as it is a unique story to tell.

Who would’ve thought that someone whom I have completely never met could even given me as a reference of knowledge as big as Dompet Dhuafa.

It is a beautiful feeling when we could be a service for those who really needs. In this case, especially to support the prevention and the counteract measures of childhood cancer, palliative care needs and any social initiatives. In Indonesia, in the Philippines, in Asia and anywhere around the world.

I remember the last question given to me was, are there anything I would want to change now that I can see the overall results ?

I pause myself to think for a moment and said, no. There are none.

I look to see a small smile that continue with a question, aren’t there anything you would like to do better ?

Honestly, no, I said to them.

There are no perfect benchmark to what is best in practice implementing any social impact model from my point of view. Every story is unique and over the course of the journey, with all the conditions and situations we had to overcome, I believe we have done our best. I wouldn’t change anything.

On the other hand, I feel it is important to develop our own journal throughout the journey we have experienced.

Especially when our experience are unique and what we have done is new. 

Understand that it is very important to never stop building our own expertise. Sharing to people not only who we know but also who we should know, building a network and digital footprints of our own.

Having to understand that one day, these writing, these stories in a form of strategic management journals would be useful to others.

Tyas is now Partner Consultant and Trainer on Digital and Social Media at Bangwin Consulting, Freelancer, Writer/Blogger, Podcaster. For project enquiries, tyas@bangwinconsulting.com

Tyas Social Project – Going Palliative

English Version

#TyasSocialProject #8

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, tyas@bangwinconsulting.com

Tyas Social Project – The Task Force

English Version

#TyasSocialProject #7

Who are the Task Force of Pita Kuning Psycho-Sosial Formulation

Tyas Amalia Yahya

Tyas has the same name as me. Tyas had to changed her name into Lia when eventually mix-ups became issues during executions with any external parties. Hahahahah sorry bout that. Tyas is one of many volunteers that fell in love with Pita Kuning. She is so committed to help children with cancer for more than 6 years since I came in on October 2015. If today is 2018, Tyas has been with Pita Kuning for 9 whole years. An amazing time and contribution. With Pita Kuning, Tyas met with so many people and experience many things. Witness what has happen during the years, through many milestones, and keep founding herself wanting to contribute more to Pita Kuning.

A smart lady graduated from FISIP University of Indonesia, majoring in Social Welfare, is one of the people I knew way back in the days before my time as chairman for Pita Kuning. Social Welfare. those who graduated become a Social Worker. A role that is so important to the social institutions and foundations in Indonesia but so rare to be understood or lacking awareness about it.

As Lia apparently has gain many knowledge, she became very much valuable in the development of Pita Kuning moving forward and become better. her contribution through her direct experience becomes our  railway or ring fence and structure to a better management system.

Ita D Azly

My introduction in meeting mba Ita was truly a calming experience. Finding the right expert to help us build a new system that supports childhood cancer was at all not easy. At this point, I have met, chat, try to get acquainted with many psychologist. Soooooo many. With psychologist from many field of background and different experience. But it took a while for then we gain learnings that was so useful in a very short time.

Mba Ita is a family psychologist that as many experience handling difficult cases of violence and deviate. Besides that, cases that comes by the impact of disease that is difficult to cure like AIDS, Cancer and others are some within her interest.

Her contribution in building the new services for Pita Kuning cannot be taken lightly. Driven by her passion and good intention to help from the start, like our vision and mission to the formulation needed that has the right composition to fit in with the needs of childhood cancer.

Through mba Ita’s help we have learn a lot on what is psycho-social, how to asses and evaluate a case of childhood cancer and their family, how we put it all the knowledge together within the work process of what we have, a group of hired and volunteer workers.

It doesn’t stop there, her role and presence also gave a lot of values in knowledge that gave us more substance in briefing and trainings. Mba Ita is a true hero for Pita Kuning.

Noviana Eva

I have known Eva from my previously at Putera Sampoerna Foundation. I recruited her as Digital Community Officer for the division I lead Digital and Social Media, a part of Centralised Marketing & Communication. Eva is a person who is always easy going, sharp and has a positive spirit. So I asked her to join in the base of where this organisation is going. Community Partnerships as well as to support Marketing and Communication that would be beneficial for us as well.

In the beginning of Eva contributions of developing the service product formula is to seek strategic partnerships that would give benefits to our services and also the formulation of assistance activities. Eva would lead the skilled task force with the champions in social driven activities, communities and volunteering, consist of, Muhammad Fikri – Head of Community, Bukalapak, Yudha Adyaksa – Chairman of Pramuka Youth (Indonesian Youth Scout), Yosea Kurnianto – Founder Youth ESN, Hety A. Nurcahyarini – Activist in Education, Indonesia Mengajar and more. Gathering interesting insights and inputs from many peoples that were involved in building social initiatives through out Indonesia. As we understood our strength at Pita Kuning that was built upon a group of young volunteers right from the start.

Eva also composed a volunteering bible to support all the activities in Pita Kuning in objective of making volunteering sustainable within the work process.

Ning Mahayu

Ning is someone who gain knowledge from Putera Sampoerna Foundation for 6 years. Because of that she has many experience building social initiatives, programs and activities. She was a part of the team when the social initiatives of Sampoerna Academy by the education pillar, Sahabat Wanita by the Women empowerment pillar, Koperasi Siswa Bangsa or a union cooperatives of students as well as a part of PSF’s Cutural Development. I have worked at the same office but I would admit, I have never work side by side, together in a project with her. But personally, as someone show likes to observe, I have quite fond and witness her potential from a far.

To seek the head of services for Pita Kuning I immediately remember Ning. Ning has everything we need. 6 years of experience in building social programs, accustom of working by professional structure and loves the social institution world. Perfect.  her contributions were huge in building the services and also the operational aspect of Pita Kuning til now.

Among many strengths that Ning have, I feel, Ning’s core strength was having the ability to learn new things completely and in depth. She relies on the actual “institution of information” as the foundation and instrument to develop the formulation of a product services. her clarity to justify from all sides and have the heart to see makes her analysis also producing solutions for humanity. Up for any challenge , Ning has the potential to be a good leader.

Mustika Kusumaningtyas

Tika is one of the last person I’ve asked to join in this organisation. I have known her from back in the days we where in the same company at Multiply Indonesia, one of e-commerce pioneer in Indonesia during that time.

I admire her when observing her role as Lead Operational Customer Service. Smart, sharp, data driven, rigorous, and have a sense of strong management skills for both operasional and process flow. That is why I approaced Tika. Later she agreed to be vice chair for Pita Kuning.

Tika is passionate in healthcare for children. You can rely on Tika to do anything finance and operational driven. her contribution in building this formuation for Pita Kuning service is huge as she was the one who connect it all together, always accomplished to find operational matters needed to taken care of and always care to pay attention to each process and each issues.

Click on each of their names and you can learn more about them.

Go back to, the formulation story. Or,

Go to the next story, Going Palliative Care.

Tyas is now Partner Consultant and Trainer on Digital and Social Media at Bangwin Consulting, Freelancer, Writer/Blogger, Podcaster. For project enquiries, tyas@bangwinconsulting.com

Re-invent yourself anytime

Read this. Remember this. Recite this. And make this as the perfect example for those who thinks it’s too late to change or make something new.

When harry met Sally, Sleepless in Seattle, You’ve got mail and lastly Julie and Julia are Nora Ephron’s movies.

Nancy Meyers’ some movies are Parent Trap, Something’s Gotta Give, It’s complicated, The Intern.

As for Aline Brosh McKenna is known for writing The Devil Wears Prada , 27 Dresses , and for co-creating The CW’s Crazy Ex-Girlfriend TV Show.

These are all hits ! All movies remain classics and loved til now.

They’ve all were in their late 40ies and early fifties, had passed over 20 years building their career before change paths and succeed.

Grace Coddington after 30 years’ fashion career in vogue, as she claims that she is a shy person who really don’t like to talk in public embark a new career in the age of 77.  Grace now is the lead host of Face to Grace, a video show series that interviews artist and professionals in fashion.

As far as we can see from these experience there are no limits. You need to keep moving, and stick to what you love. You have some choices. Either you learn and adapt your output to the new medium that you are most comfortable with or embrace what lies ahead.

Here’s a video of Jennifer Lopez’s guide to reinventing yourself.

Her everyday mantra, “I’m youthful and timeless at every age. I am ever evolving and life is full of joy and adventure.”

I think we all should start making our own mantra. Don’t you think ?