Help bring Palliative Care to Indonesia's children

For many of us, imagining the plight of a terminally ill child is impossible. When death becomes a reality of life, any small kindness can help to improve a child’s remaining days.

At Rachel House, we help terminally ill children find peace and happiness at the end of their lives.  We work in the poorest communities of Jakarta to raise awareness about palliative care, to look for new patients, and to make a difference to the healthcare system in Indonesia on a larger scale.

Since our last report, our nurses have travelled hundreds of kilometres along the back roads of Jakarta to reach patients in their homes, offering pain relief, advice for the parents and a shoulder to cry on. We need more nurses to spread out further into the poorest areas of Jakarta, and to raise awareness in the community. 

We will tell you the story of one little girl, Karina, and how Rachel House has been able to help her.  How many more children are there who need our help? 

Karina’s Story…

Shining a light on those in distress 

Karina is a three-year-old girl who has lost her mother and brother to HIV. Karina's father is a gentle spirit, also suffering from HIV: now, they only have each other.  

The family moved to Jakarta from their village to earn a living. Karina and her father are living in a car park during the day and sleeping in a rented room at night. Without a residence, they are struggling to get a permit to access healthcare.  They have to rely on the kindness of the healthcare centres and on Rachel House nurses to get the medicine Karina needs. Her father is also suffering with his own symptoms, which makes it difficult for him to care for her.

Karina suffers from HIV and Lung tuberculosis, and recently her symptoms have been getting worse.  She is unable to eat without vomiting and she cries out for her mother.  As she finally realises that her mother and brother won’t be coming back, she withdraws into herself, clutching a photograph of her lost family members wherever she goes. 

Without the weekly visits of Rachel House nurses, it would be impossible for Karina’s father to get the medication to ease her condition and improve her quality of life. Due to strong relationships forged with the healthcare centres, the nurses are able to lobby for treatment and help the father get the permit he needs.  Karina’s life is hard enough, and if we can ease her pain and greet her with a smile, we can improve her quality of life.  A little joy goes a long way. 

Training volunteers and community members

From one tree, you can make a thousand matches…

Stories like Karina’s are why Rachel House was founded: on the belief that no one should suffer alone.  Our other aim is to change the healthcare culture in Indonesia and the developing world. As in the Western world 30 years ago, palliative care is new to many healthcare professionals here. When a child is terminally ill with cancer or HIV, and when treatments are no longer viable, it is difficult to convince the doctors that it would be kinder to manage their pain and symptoms to make their final days comfortable than it is to keep putting them through painful treatment.

Community Network in Palliative Care (“CNPC”) Program

After careful community research, we set up the CNPC program in late 2013 to help spread the awareness about the aims of palliative care amongst community volunteers and the general population in Jakarta.  Targeting the poorest areas, this program has proved very successful in making connections and encouraging collaboration between healthcare centres, nurses, community volunteers and hospitals.  It has helped demonstrate that teamwork and communication are needed to give these children the best possible experience in the last days, weeks or months of their lives. Despite being run mainly by one nurse, this program has got off to a flying start.  Now we need further help to grow the program and maintain the good work it has already achieved. 

2013 has been a year that launched wondrous new beginnings filled with amazing blessings. The year saw Rachel House’s work validated in important ways, nationally and internationally. 

Nationally,

a)     Rachel House Palliative Care Workshops received accreditation from the National Nursing Association (PPNI);

b)    A Memorandum of Understanding was signed with Cipto Mangunkusomo Hospital, the National Public Referral Hospital to provide palliative homecare for their pediatric patients;

c)     We welcomed the medical audit team assembled by Singapore International Foundation and are delighted to announce that the audit was passed successfully. 

Internationally, Rachel House was invited to speak at the Asia Pacific Hospice Conference 2013 event – a first for Indonesia.

Launch of New Initiative

 In the 7^th year of our operations, Rachel House launched the Community Network in Palliative Care (“CNPC”) program to bring basic palliative care training to community volunteers and empower women community volunteers in North Jakarta to care for those who are sick in their communities. 

Every year, 500,000 people are estimated to be sick at home in Jakarta without access to healthcare or with no knowledge of how to access healthcare. It is our hope that the trained CNPC community volunteers can help those who are sick in their community to navigate through the public health system, refer them to the appropriate health channels available and if needed, help provide basic care at home.

The 1-week classroom training and 4-week field training was piloted in October, starting with 10 senior women volunteers from 2 RWs*.

Impact

At the time of writing, the homecare service has reached a total of 125 patients in 2013. Training of medical professionals from public and private health institutions has also intensified with the launch of our palliative care advocacy work.

The Blessings of Volunteers, Donors & Supporters

This has been a year of incredible blessings with wonderful support from donors and supporters. 

In answer to our prayers for assistance from palliative care professionals, we were blessed with visits from international palliative care experts from Singapore, New Zealand, Australia and United Kingdom. As an absolutely fabulous bonus, we also received volunteer applications from 2 palliative care and oncology-trained nurses who happened to be in Indonesia with their families, who are both immediately welcomed into our family and our patients’ families.

Finally, we would like to thank all our most wonderful donors and supporters for their continued faith in our work, for walking with us on this journey and for making this work possible. Thank you for giving us hope. 

“Hope is like a road in the country;

there wasn't ever a road, but when many people walk on it,

the road comes into existence.”  ~ Lin Yu-tang

*RT or Rukun Tetangga could be best translated as a “Neighbourhood Association”, and is typically made up of 10-20 households (or families). Whereas RW or Rukun Warga is “Community Association” consisting of 5-10 RTs.