Yayasan Rumah Rachel ('Rachel House')

Rachel House was registered in November 2006 as a charitable organization under the name of Yayasan Rumah Rachel in Indonesia with the purpose of providing palliative care to children from poor and needy families living with life-threatening diseases, such as cancer and HIV. It is the first pediatric palliative care service in Indonesia, providing pain and symptom management for children in the final stages of their illness at free of charge. Without the service, many of these children from poor families would spend their last days in horrific pain without medical assistance. Rachel House was founded in the hope that no child would ever have to die in pain, without love and care. It is bu...

Yayasan Rumah Rachel ('Rachel House')
Graha Indramas, Jalan AIP II K. S. Tubun Raya, No. 77
Jakarta, DKI Jakarta 11410
Indonesia
+622153652197
http://www.rachel-house.org

Board of Directors

Hutomo Santoso, Notariza Taher, Lynna Chandra, Jimmy Masrin, Pranata Hajadi

Project Leaders

Lynna Chandra

Mission

Rachel House was registered in November 2006 as a charitable organization under the name of Yayasan Rumah Rachel in Indonesia with the purpose of providing palliative care to children from poor and needy families living with life-threatening diseases, such as cancer and HIV. It is the first pediatric palliative care service in Indonesia, providing pain and symptom management for children in the final stages of their illness at free of charge. Without the service, many of these children from poor families would spend their last days in horrific pain without medical assistance. Rachel House was founded in the hope that no child would ever have to die in pain, without love and care. It is built on the principle that "we are not here to add days to the children's lives, but to add life to their remaining days". Its mission is to provide palliative care for children with life-threatening conditions allowing them to live their remaining days with joy and dignity in a non-discriminatory, safe and loving environment. Rachel House's goals are: To advocate and raise awareness of the need for palliative care in Indonesia To assemble and train multi-disciplinary staff in pediatric palliative care To train and develop home care teams to provide support and education to families to allow children with life-threatening conditions to be cared for at home To reinforce local community's capacity to care for children in need through education To partner other organisations that add value to our mission To secure long-term financial sustainability Being the first pediatric palliative care service in Indonesia where palliative care is not taught in medical schools, Rachel House's pioneering team of nurses were trained by palliative care professionals from neighboring countries such as Singapore, Australia and New Zealand. In every training opportunity, Rachel House has ensured the participation of medical professionals (doctors, nurses & pharmacists) from the large government-owned hospitals and public clinics, nursing schools and health volunteers and social workers in the hope of building the capacity in palliative care. A significant outcome of this targeted training has been the establishment of the first pediatric palliative care unit in Indonesia at the Dharmais Cancer Hospital in late 2010. In the 3 years since the first patient was admitted to Rachel House in December 2008, the service has reached more than 150 children in the final stages of cancer and HIV, providing them with pain and symptom management and empowered their caregivers with the essential education.

Programs

The programs that Rachel House undertakes includes amongst others: A. Building awareness amongst the Medical professionals As palliative care is a new concept in Indonesia, both amongst lay people and the healthcare professionals, Rachel House's team had to provide the necessary education to the partner referral hospitals to brief them on the role of palliative care for their patients, and to introduce the referral processes necessary. Education to the nursing teams in each hospital was a key part of the process as they are the main interface for patients. In the early stages of the relationship with the referral partner hospitals, Rachel House's team would have to actively accompany the nurses at the hospital wards to explain the role of palliative care, including a detailed explanation as to why it is appropriate for the family to consider the services being offered by Rachel House, assist the nurses in the communication challenges they experience in "breaking bad news", especially in the need for medical professionals to listen and to allow patients/families to talk. A significant amount of time is needed in raising the awareness of the role of palliative care to ensure children are given the choice of spending their last days in relative comfort of their home while having the security that their symptoms would be managed and pain alleviated; this instead of being in chemotherapy or radiotherapy treatments till their final breaths. Today, Rachel House has established close working relationships with the Pediatric wards of some of the largest public hospitals. As Dr Cynthia Goh, Senior Consultant and Head of the Department of Palliative Medicine at the National Cancer Centre Singapore (leading the teaching team from Singapore) commented in September 2011, "this is a major and important achievement". B. Dedicated team of nurses How is Rachel House's team of nurses different from others in Indonesia? High clinical standards - Rachel House's nurses, trained by the palliative care professionals from Singapore, understand intimately the regression of each line of childhood cancer (such as retinoblastoma or neuroblastoma etc) as well as HIV, and the medication needed at each stage of the regression. This is specifically so that they are well-prepared at each visit to the homes of the children to bring the necessary medication to alleviate the symptoms suffered by the children; and equally importantly to prepare the parents/caregivers of the children of the journey ahead so as to lessen the shock when the symptoms appear. Preparing the caregivers adequately will mean a more peaceful time for all in the family and ultimately for the child. Improving the quality of life for the child and the family is after all, the main objective of the service. Caring, passionate and dedicated team - Rachel House's nurses are trained in the initial visit to any patient to conduct not only a thorough physical assessment, but also to spend the time to understand the history of the child before he/she was diagnosed with the disease. The intimate understanding of the child as first and foremost, a human being, rather than a patient with his/her symptoms generates compassion, and ultimately a deep dedication to the patients. The nurses, in their commitment to serve, travel out to the homes of the patients on their motorcycles under the worst conditions - to provide care and dignity for the children on their most challenging journeys. For each patient that the team undertakes, not only do they provide the child the best medical attention he/she needs, but time is also taken to build up the network of support around the patient's home to ensure help is around when needed. This could be in the form of preparing the local health clinic officials in the medical assistance the child needs, checking with the local pharmacy that the medication required by the child is available, or checking with other local NGOs for nutritional support that could be provided for the child. Rachel House's nurses are also trained in the critical technique of communicating with patients and families, on how to convey bad news - understanding the impact on the families. Nurses as business managers - Each homecare satellite is managed by a senior nurse who manages not only the patient load for each satellite, but acts also as the business development manager for each satellite area where she establishes hospital and NGOs partners in the area, she reports the financial accounts on a monthly basis (satellite expenses and monthly expenses per patient) and provides training to the community to increase awareness of palliative care and Rachel House's service. This is the 1st batch of nurses who is technology savvy, where patient report is being uploaded into a common filing system on a weekly basis, accessible by all the nurses from the other satellites (to ensure proper backup of the service in case on the nurses are ill). C. Training the community - community development & empowerment Centre of Excellence Rachel House believes that if an improvement in the quality of medical service is to be a reality, not only does the medical profession need to trained, but patients and their families will also have to trained to understand that they deserve better care. The team is therefore dedicating a significant amount of its time in training the communities (health volunteers that are often made up of mothers) to help increase the awareness of palliative care, and the public healthcare professionals to increase the understanding of pain and symptom management. It aims to establish itself to be the Centre of Excellence for pediatric palliative care in Indonesia one day in the near future, where nurses can be trained and be certified with the basic pain and symptom management abilities. Since the recruitment of its first team of nurses in 2008, the team has trained over 600 healthcare professionals and health volunteers in the basic understanding of palliative care. D. Management Rachel House's board members are made up of businessmen who are respected not only for their business acumen (and success) but also their social consciousness. The board composition is as follows: TRUSTEES Pranata Hajadi - Chairman Hajadi & Associates, Co-Vice Chairman and Executive Vice President of PT Indomobil Suskes International, Commissioner of PT Lautan Luas Jimmy Masrin CEO & Vice President Director of PT Lautan Luas Tbk Lynna Chandra EXECUTIVE BOARD Hutomo Santoso - Chairman Owner of Body Shop franchise in Indonesia Notariza Taher - Treasurer Hajadi & Associates Dr Edi Tehuteru - Secretary Pediatric oncologist at Dharmais National Cancer Centre Prof. Irwanto Psychologist and professor at Atmajaya University ADVISORS (to the Trustees) Fred Tumbuan Tumbuan & Partners Veronica Colondam Founder of YCAB (Yayasan Cinta Anak Bangsa) Ronald Liem Owner & Publisher of Prestige Magazine Indonesia & DestinAsian magazines Rachel House's financial accounts are audited yearly. Each of its nurses is taught to account for the expenses incurred per patient per month, including the satellite expenses. The office and administration team is kept to a small team of 2, comprising of a General Manager/office administrator (HR, legal, and other administrative matters) and a finance executive. As it is more complicated to conduct an audit of the service provided to Rachel House's community, the management relies on the palliative care professionals/trainers from overseas to advise on the quality of the care that the medical team is providing, and the areas for improvement. This is conducted on a regular basis - at least once every 2 - 3 months.

Statistics on Yayasan Rumah Rachel ('Rachel House')

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