Pediatric Hospice for the poor in Indonesia

 
$28,977
$6,023
Raised
Remaining
A beautiful smile from our courageous patient
A beautiful smile from our courageous patient

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 7th 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. 

 







Faces of our volunteers
Faces of our volunteers
Impact at a glance (as of 30 Nov2013)
Impact at a glance (as of 30 Nov2013)
CNPC training in progress
CNPC training in progress
Rachel House workshops with accreditations
Rachel House workshops with accreditations
At the launch ceremony in April 2009
At the launch ceremony in April 2009

In April 2009, Rachel House signed a 2-year Pediatric Palliative Care Training assistance with Singapore International Foundation. This was to be the first pediatric palliative care training available for medical professionals in Indonesia, and the training that launched Rachel House’s palliative care service.

On October 3rd 2013, the team returned to conduct an audit of the medical team they have trained, and to review the outcome and impact of the 3-year program (program extended by 1 year) that consisted of 8 weeks of training.

The audit team went on visits to patients’ homes to assess the quality of care that is being provided by the Rachel House nurses to the patients and their families. Rigorous reviews were conducted on patient reports and documentation, medical and operational protocols of the service. Nurses’ critical thinking was tested, systems and processes audited. 

The team also reviewed the nurses’ presentation skills, to assure themselves that the knowledge imparted to the team will be disseminated to others in Indonesia.  

We were thankful to Singapore International Foundation for organising the audit team (wonderful volunteers) to systematically review the work and patient care by Rachel House's team - all of which gave us an opportunity to improve the quality of our service. 

Rachel House was also fortunate to have a nurse volunteer, Lyn Rhodes-Cheong, from Durham (UK) to work with the nursing team for 2 weeks following the audit to implement the recommendations by the Audit Team. 

Nurses hard at work preparing for audit week
Nurses hard at work preparing for audit week
Volunteer Lyn implementing audit recommendations
Volunteer Lyn implementing audit recommendations

Attachments:
Rina Wahyuni, Senior Nurse Coordinator
Rina Wahyuni, Senior Nurse Coordinator

Despite not knowing much about caring for terminally ill children, former paediatric ICU (Intensive Care Unit) nurse Rina Wahyuni, 34, took a leap of faith in 2008 to work in Rachel House.

While working in an ICU, Rina often felt conflicted when she witnessed attempts to cure children who were dying. “I often thought in my heart, it is not possible for this child to be cured based on his medical history. Why they are still trying to cure him? This child is tired already.”

Today, Rina and her colleagues at Rachel House are instrumental in advocating palliative care in their community. They provide end-of-life care for patients from families who cannot afford medical care. And they share their knowledge and experiences as a palliative care nurses to raise awareness among the medical community in Jakarta.

Cheering her on in her journey as a palliative care practitioner were groups of specialist volunteers from Singapore who shared their expertise through eight training visits that the SIF organised from 2009 to 2012. 

“When I first started out, it was difficult to even find information on what palliative care is all about here in Indonesia,” says Rina. “But with SIF’s training over the past four years and with the knowledge I gained, I grew more confident in spreading and promoting palliative care”

Building Confidence.

Beginning in 2009, a total of 20 palliative care specialist volunteers from Singapore travelled to Jakarta, each time spending a week to train the Rachel House staff in an effort to improve medical services for children suffering from life-threatening diseases. Each team consisted of a multi-disciplinary team of volunteer doctors, nurses and social workers.

The Singapore volunteers taught Rina the essence of palliative care – a holistic approach that provides quality of life for patients through pain and symptom management, while integrating the emotional support of family into the plan of care.     

As this approach to medical care is a relatively new field in Indonesia, knowledge imparted by the Singapore volunteers has proven to be a confidence booster for Rina whenever she attempts to share the concept of palliative care with others.

“Initially, it was a huge challenge for us when we tried to share the approach of palliative care with our medical colleagues as many of them were not even aware of it,” she says. “Often we faced difficulties when we work with co-ordinating doctors who do not share our perspective on caring for patients who are dying.”

This newfound knowledge  also enabled Rina to improve communication with patients’ families. “Now I am better equipped when I have to inform parents about the prognosis of their child’s illness. I also try to educate the caregivers about palliative care using what I have learnt from the Singapore volunteers.”

Enhancing their clinical skills and knowledge has also helped Rachel House gain medical credibility within the healthcare community in Jakarta. It now receives referrals from eight public hospitals, one private hospital and 15 healthcare clinics – all of which did not know about palliative care prior to working with Rachel House.

Paying it forward. 

Efforts by the Singapore volunteers have empowered the staff of Rachel House to be catalysts for change in their professional community. In public outreach activities organised by Rachel House, Rina and other nurses regularly share their experiences with other medical professionals. They have also been invited to nursing schools to give talks on palliative care nursing.

“This is a new area of knowledge for us here in Indonesia and I believe I must learn continuously, so I can share my knowledge and influence other colleagues to incorporate palliative care into their practice.”

Links:

Nurse Rina entering patient
Nurse Rina entering patient's home

There are many stories that are left untold in the daily travels of Rachel House's nurses - stories tucked deep in their hearts that speak of great devastation.

 

This is a story of a little boy's brave journey. Miki was 6 month-old when his health problems began. What started with a cough quickly degenerated into more serious TB, diarrhoea and malnutrition. Life has not been easy for the little soul who has been in and out of the hospital too many times. The medical expenses have drained the family's resources of US$4/day. In a 12sqm room tucked behind the high-rise buildings in the Central Business District of Jakarta, Miki's family share the tiny poorly ventilated space with another family. Miki was finally referred to Rachel House by his doctor to help stabilize his condition and to provide sympton management and support to his mother.

 

The photos below capture a visit by one of Rachel House's nurses, Rina, to Miki's home to monitor his progress and to help manage the many symptoms that have caused him grave suffering, and great distress to his parents.

Rina brings a little sunshine & hope
Rina brings a little sunshine & hope
Nurse Rina at work
Nurse Rina at work
Impeccable assessment - core of palliative care
Impeccable assessment - core of palliative care
Comprehensive medical report to document visits
Comprehensive medical report to document visits
Education & support to caregiver - optimum care
Education & support to caregiver - optimum care
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:

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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