Help bring Palliative Care to Indonesia's children

by Yayasan Rumah Rachel ('Rachel House')
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Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
President Tony Tan and Mrs Mary Tan with a patient
President Tony Tan and Mrs Mary Tan with a patient

JAKARTA - A year after her close friend died of cancer in 2005, former banker Lynna Chandra set up Rachel House here to care for needy, terminally ill children with conditions such as cancer and HIV.

But paediatric palliative care was largely unknown then. She turned to the Singapore International Foundation (SIF) for advice and help.

Since 2009, doctors, nurses, social workers and psychologists from Singapore have travelled here to train health-care professionals from Rachel House and Dharmais Cancer Hospital. These professionals in turn train their countrymen to help patients live out their lives with dignity and minimal pain.

Singapore President Tony Tan Keng Yam visited the hospital to meet volunteers and staff yesterday, the third day of his state visit here, and commended them for their work and enthusiasm, which had been an inspiration to others and helped foster closer ties between the two countries.

"I am glad to see Indonesians and Singaporeans working together in a common cause," he said. "It is true that human compassion is not constrained by artificial borders."

Since 1992, more than 700 Singaporeans have volunteered with SIF to work with local partners in Indonesia on a range of educational, medical and social projects.

Dr Tan noted that while Singapore volunteers have shared their know-how with Indonesians, they have also learnt a great deal.

"Community projects like these strengthen the bonds between Singaporeans and Indonesians from all walks of life," he said. "They also promote empathy and understanding between our two peoples."

Singapore, he noted, has been fortunate to have a relatively developed palliative care sector.

"There's a great need in Indonesia, and I hope that SIF will continue to be a strong partner with Rachel House and other Indonesian institutions helping in areas that are important," he added.

Rachel House's nurse coordinator, Ms Susi Susilawati, said the training has helped her and her colleagues ensure that some 100 needy children under 15 can live out their lives with dignity, fortitude and minimal suffering.

Nurses and social workers regularly visit them at their homes in the capital.

Indonesia's National Association of Nurses has endorsed this home-care model as one to be replicated across the country.

Ms Chandra, 45 and a Singaporean, now envisions a day when trained palliative caregivers can be parked at Jakarta's ubiquitous convenience stores. Nurses who benefited from the SIF training are now sharing their skills with others in West Java.

SIF volunteer Dr R. Akhileswaran, 53, who heads Singapore's HCA Hospice Care and has been on six visits here, said he feels humbled that palliative care in Singapore, which was started by volunteers, is taking off in a similarly meaningful way here.

Last night, Dr Tan also met Indonesians who have studied or trained in Singapore, and described them as assets to the bilateral relationship.

"While you had different experiences in Singapore, all of you were wonderful ambassadors for Indonesia. We Singaporeans learnt a great deal from all of you during your time with us," he said.

"We hope that you also developed a better understanding of Singapore and our people. We are happy to call you friends."

Dr Tan hoped they would keep up ties and stay in touch with their Singaporean friends. "The bonds you forge individually will collectively help to enhance the people-to-people ties between our two countries," he said.

 

President Tony Tan & Mrs Tan with our nurses
President Tony Tan & Mrs Tan with our nurses

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Participants at the 1-day workshop
Participants at the 1-day workshop

With a vision that no child should ever have to die in pain without love and care, Rachel House has set itself a seemingly unattainable goal.   

With only a handful of nurses on our team, it was clear to us that as soon as the first team is sufficiently confident in their knowledge of palliative care, we will have to begin sharing the knowledge quickly and widely to ensure more children living with life-threatening conditions can be provided with palliative care.

So, in line with this commitment and holding the vision clearly in mind, Rachel House held its very first public workshop on Palliative Care on 29th August 2012.

The event received an overwhelming response from the medical community, even though it was held the week immediately after the long Eid holiday. A total of 38 doctors and nurses from some of the largest public and private hospitals, and medical teaching institutions in Indonesia attended the 1-day public seminar. 

The 1-day seminar was led by two of the most renowned palliative care experts in the Asia Pacific region, Dr Sue Marsden and Liese Groot-Alberts. Dr Sue Marsden is a Palliative Medicine Specialist whose initial postgraduate medical training was in Radiation Oncology. Liese Groot-Alberts is a grief therapist, well known for her trainings in trauma, loss, grief and bereavement. Both Sue and Liese had been part of the Elizabeth Kubler-Ross Organisation facilitating team for Australasia.  

It is an exciting time for palliative care in Indonesia - the momentum we have been waiting for is now here. It is our sincere hope that through these learning and sharing sessions, more children will benefit from improved quality of life in their courageous battles against illnesses.

Please visit our blog (http://www.rachel-house.org/blog) for more information on the event. 


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Jacqueline Lee is an InTheField Traveler with GlobalGiving who is visiting our partners’ projects throughout Southeast Asia. Her “Postcard” from the visit in Indonesia:

On July 24, I accompanied Rachel House on a home visit to one of its patients – a 7-year-old boy who has leukemia and relapsed just before he was supposed to start the new school year. 

After visiting Rachel House’s office to meet the staff and nurses, we were off to the young patient’s grandmother’s home where he and his mother stay.  They stay here so that he can be closer to treatment and support.  The mother and grandmother welcomed us with warm, sincere smiles. The patient had been improving until recently.

When we arrived, the nurse discussed the patient’s symptoms with the mom, brought him a new backpack since he was hoping to return to school, and consulted the mother on his oral chemotherapy. Because some families do not know how to access Indonesia's free health care, the staff of Rachel house assists and guides them in the process from registration to accessing it.

As I observed Rachel House staff with the family they were not like outsiders stepping in to advise on the family’s lives, Rachel House was a part of the family - connecting on a personal level instead of via a chart. One of the nurses explained that this is why she joined Rachel House. She said that working in a hospital, one would feel a bit separated since the charts dictated everything. Here she can support the family on an emotional level and connect more. 

After the visit, we parted with the family and the grandmother had tears. She said she was so happy to have the support of the nurses coming to their home. Her grandson was weak and could rest at home. Rachel House hopes to be able to provide this kind of support for other diseases in addition to cancer and HIV. Additionally, they hope to recruit new nurses while expanding awareness and understanding of palliative care in Indonesia. 

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The courageous team
The courageous team

In recent months, palliative care has quickly become the topic of discussion for many in the medical professions in Indonesia. As the first team of trained pediatric palliative care nurses in Indonesia, Rachel House's nurses receive many invitations to speak at medical conferences - to share their experiences in building the service and their knowledge in running a home-based palliative service for the marginalized communities in the sprawling urban areas of Jakarta. 

Last month at a forum attended by 200 medical professionals from public and private hospitals and teaching universities in West Java, Rachel House was invited to talk about our experience in providing home-based palliative care to patients with cancer and HIV. There were numerous cases shared by medical practitioners to illustrate the dire need for home-based medical care in Indonesia; presently, patients are being sent home with little or no preparation, both for the patients and for the caregivers - causing much suffering for all. Many bemoaned the dearth of trained home care nurses.

At Rachel House, we celebrate the courage and the commitment of our nurses who brave the horrific conditions to reach the children in need. 

As awareness of palliative care increases in Indonesia, our team begins to engage many more from the public hospitals in the hope of sharing the knowledge to the wider community so as to allow us all to work towards adding quality to the children's remaining days. 

Our nurse at work
Our nurse at work

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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website:
Project Leader:
Lynna Chandra
Jakarta, Indonesia
$101,221 raised of $120,000 goal
 
689 donations
$18,779 to go
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