Pediatric Hospice for the poor in Indonesia

 
$22,189
$12,811
Raised
Remaining
Dec 26, 2012

2012 - A year in Review

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

This has been a year of consolidation and a year of celebration.

 2012 began with a new challenge as the team prepared itself for a change of leadership. This time, instead of looking externally the Board decided to promote someone who has been with Rachel House for 4 years. The entire team rose to the occasion to support the decision, teamwork was elevated a notch higher and commitment to the cause renewed.

 This was a year of celebration where:

  1. Our nurses were invited to speak at many nursing schools in Jakarta and in West Jakarta Province to share their knowledge of palliative care;
  2. Rachel House’s homecare model was endorsed by the National Nursing Association (PPNI) as the homecare model to replicate throughout Indonesia;
  3. Our nurses were invited to participate in “difficult case discussions” at one of the major hospitals in Jakarta, chaired and attended by senior doctors and professors, to offer their recommendations in relation to palliative care.

On the 6th year of our operation, we celebrate the courage of our team who has risen to the challenge of leadership so wonderfully!

 

President Tony Tan’s visit

Singapore’s President Tony Tan Keng Yam, patron of Singapore International Foundation, visited Rachel House on 29th November 2012 on his 5-day state visit to Indonesia at the invitation of President Susilo Bambang Yudhoyono. The visit was hosted at Dharmais Cancer Hospital, to showcase the very first pediatric palliative care inpatient unit in Indonesia that was established as a result of the training initiated by Rachel House supported by Singapore International Foundation in 2009.

 

Impact

Partner Organisations

In the 4 years since the service began (in August 2008), we have successfully introduced the concept of palliative care to a large number of medical professionals from the public and private healthcare systems. The outreach has been extended in the last 12 months to include medical and nursing schools as far as the West Java Province. Slowly but surely, a sector-wide impact is being created in the healthcare industry in Indonesia.

In 2012, through the relentless advocacy work of the team, three hospitals were added to the list of partner organisations that are now referring patients to Rachel House and participating in the palliative care training that we organise:

  1. MRCCC, the largest private cancer hospital in Indonesia,
  2. Harapan Kita Hospital, the largest women’s and children’s public hospital in Indonesia, and
  3. Tarakan Hospital, a public hospital serving the East Jakarta population.

This brings the number of partner organisations currently working with Rachel House to a total of 25 (8 public and 1 private hospitals and 16 public health clinics). 

Palliative Care Service

At the time of the writing, the service reached a total of 83 children in 2012 (17 cancer and 66 HIV), and provided training to over 500 caregivers and healthcare volunteers. 

Outreach

The advocacy work to build the palliative care sector in Indonesia remains at the core of our activities. Some of the most significant impact achieved through our advocacy work includes:

  • Cipto Mangunkusomo Hospital, the largest public hospital in Indonesia that sees close to 1,000 children annually, began sending its doctors and nurses to participate in the palliative care training organized by Rachel House. We understand the hospital intends to launch its own pediatric palliative care service eventually.
  • Harapan Kita Hospital, the largest women’s and children’s hospital in Indonesia that sees more than 700 children annually, has announced its intention to start its own pediatric palliative care service and is currently liaising with our nurses for assistance in setting its admission and discharge criteria;
  • MRCCC, the largest private cancer hospital in Indonesia, has begun participating in the public seminars on palliative care we organized this year.

The Palliative Care Public Seminars organized by Rachel House this year have seen a total of 160 participants, ranging from medical professionals from public/private hospitals & clinics and the public prisons to teaching staff from medical and nursing schools.

 

International Teaching Panel

We have been truly blessed with the support from the international palliative care community that has continued to share their knowledge, skills and their commitment with our team and our community. Our grateful thanks to: 

Jan Philips, Dr Rosalie Shaw, Liese Groot-Alberts, Dr Sue Marsden, Joan Marston, Dr R Akhileswaran, Amy Tan, Tan Wee King and Eileen Chua.

 

New HIV Movement

In conjunction with the International AIDS day, we launched a much needed roundtable discussion with key players in the HIV arena, ranging from doctors active in pediatric HIV care to NGOs active in providing psychosocial assistance to the children and their families. The aim of the roundtable discussion is to share ideas on ways of tackling the biggest issues facing women and children with HIV today in Indonesia, supported by the best practices from South Africa shared by Joan Marston. For Rachel House, our dream is to achieve “Zero children born with HIV in Jakarta”.

 

 Volunteers, donors & supporters

Rachel House was built from friendship - we would not be where we are today without the commitment, faith and support of so many of you. For this, and for continuing to believe in us, we thank you.

 

Wishing all a very happy Christmas this holiday and a beautiful New Year. 

Training & Advocacy @ Harapan Kita Hospital
Training & Advocacy @ Harapan Kita Hospital
Training & Advocacy at a cancer shelter with SIF
Training & Advocacy at a cancer shelter with SIF
Training at Cipto Hospital, largest in Indonesia
Training at Cipto Hospital, largest in Indonesia
A public seminar on Disease Trajectory
A public seminar on Disease Trajectory
"Zero Child born with HIV"
"Zero Child born with HIV"

Links:

Dec 3, 2012

Singapore's President Tony Tan visited Rachel House

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

Links:

Sep 12, 2012

Rachel House 1st Public Seminar on Palliative Care

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. 


Links:

Jul 30, 2012

Postcard: Project Site Visit

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. 

Links:

Jul 5, 2012

Our Nurses in the Community

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

Links:

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Organization

Project Leader

Lynna Chandra

Jakarta, Indonesia

Where is this project located?

Map of Pediatric Hospice for the poor in Indonesia