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...
Sep 9, 2014

A Breakthrough in Palliative Care in Indonesia

Palliative Care Training Launch @ City Hall
Palliative Care Training Launch @ City Hall

How can we help the terminally-ill children from Jakarta’s poorest families find peace?

Since our last report, we are thrilled to announce a significant breakthrough in the ongoing effort to educate medical professionals in Indonesia about the importance of palliative care. With the support of the Singapore International Foundation and the wife of the Governor of Jakarta, Mrs Veronica Tjahaja Purnama, in her role as the Chairperson of the Jakarta Cancer Foundation (YKI DKI), we will soon be offering a three-year course in palliative care for practicing medical professionals in six District Hospitals (RSUD) in Jakarta and several National Referral Hospitals. We couldn’t have achieved this landmark goal without your continued support, so a huge thank you to the Global Giving community. This step is only one along our journey towards bringing pain and symptom relief to every child in need, and we invite you to walk along with us as we continue.

Since 2006 when Rachel House was established, we’ve been working tirelessly to help terminally ill children in Jakarta’s poorest areas. If you were to come along with one of our nurses on their home visits, you would be welcomed into the homes of families living in the most disadvantaged parts of the city: near rubbish dumps and filthy ports. Some of our patients have no place to call home: under a tree during the day, and in the mosque at night. Most of the care we provide is for children during the most critical stage of their battle against cancer or HIV; we know they will most likely not have much time left, but we want to give them the dignity and comfort to enjoy their remaining days. This is a difficult task, but often it is made harder by the lack of awareness amongst the medical community and the public about palliative care.

Our dream of being able to provide the best care to every child living with life-limiting conditions from the marginalized communities is finally being realized. Between 2009 and 2012, we worked with the Singapore International Foundation to train the first group of medical professionals in palliative care. This new breakthrough that will allow us to bring palliative care to all medical professionals in the hospitals in Jakarta is the result of years of campaigning and hard work: from formalized roundtable discussions, to the day-to-day uphill struggle our nurses experience in their efforts to change the perceptions of doctors within a strict hospital hierarchy and win them over to the path of alleviation of pain. Through the new palliative care course, which will involve an intensive week-long training (comprising classroom and beside teaching) bi-annually over a 3-year period, with a week-long practicum once a year in between, we hope to bridge this knowledge gap.

This exciting new step helps Rachel House achieve one of its fundamental initial goals: that of increasing the knowledge of palliative care across the Indonesian healthcare system. In order to help patients traverse the journey seamlessly from the hospital to home, more work needs to be done at the public health clinic (Puskesmas) level, as well as the community volunteer level. Rachel House has already made significant progress in both areas through its Community Network in Palliative Care (CNPC) Program and Clinic-in-a-Box Program (see our previous reports for more details).  

Your support has been invaluable in helping us get this far, and we hope you will continue to now journey with us to the next exciting stage – that of making palliative care available to every child in Indonesia allowing them to live their remaining days amongst their loved ones, with dignity and in peace. We hope you will help us achieve our vision for a better world.

Jun 12, 2014

Groundbreaking Roundtable Discussion

Indonesia
Indonesia's key players in healthcare

The Future of Palliative Care in Indonesia.

On 26th March 2014, Rachel House hosted a groundbreaking Roundtable event, inviting key players in healthcare in Indonesia to come together and discuss the alternative pathways of introducing palliative care into nursing school curriculum in Indonesia. Dr. Suresh Kumar, Director of the WHO Collaborating Centre for Community Participation in Palliative Care and an expert on community-based palliative care, came from India to attend the discussion and to share his experiences.

The event brought together key influencers in healthcare in Indonesia with senior representatives from the Ministry of Health and the Ministry of Education, major universities and hospitals across Indonesia, the heads of National Nursing Association, National Bachelor of Nursing and Diploma of Nursing Associations – to discuss ways of improving general knowledge about palliative care amongst medical professionals and the critical collaboration needed between stakeholders to make this possible.

Currently, palliative care is not well understood amongst healthcare professionals in Indonesia, with the majority of them unable to even define it. Rachel House’s homecare service that makes availablepalliative care for children in Jakarta’s poorest areas and its work in raising community awareness is largely unorthodox.

The event was a great success. Dr Suresh Kumar presented a compelling argument that with the increase of medical knowledge, more people will be living longer and may therefore require long term and dedicated palliative care. He advocated community-based palliative care to avoid Hospitals being overburdened, mobilising volunteers in the local communities to care for the elderly and the infirm in their homes. This model echoes that of Rachel House’s Community Network in Palliative Care ("CNPC"), which was piloted in 2013 in several neighbourhoods in Jakarta’s poorest areas – providing access to health assistance for those who may not have access to hospital care.

The roundtable discussion made important progress in underpinning the key issues that need to be addressed in Indonesia in order to improve access to palliative care. University representatives suggested there was a fundamental challenge today as many lecturers have little practical experience in palliative care and therefore are not able to pass the crucial knowledge of pain and symptom management onto their students. Therefore, many nurses feel overwhelmed when they begin practicing, avoiding patients who may need palliative care as they feel unequipped. The representatives from the Ministry of Health and Ministry of Education both acknowledged that changes need to be made to the syllabuses in universities to adequately prepare nurses, and training and development for professionals in hospitals are needed to help accommodate palliative care.

Everyone left the event with a real sense of excitement generated by mutual understanding and agreement, which gives hope to the possibility of palliative care being implemented in the healthcare system in Indonesia. It is now crucial for the participants to lobby support in each of their own constituents in order that palliative care can take root. It was a wonderfully positive day with the long-term dedication and behind-the-scenes work of Rachel House staff being recognized and supported by key bodies.

Mar 14, 2014

Karina's Story & Rachel House's New Program

Adding life to their remaining days
Adding life to their remaining days

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. 

 

 

Building Community Awareness
Building Community Awareness
An anonymous donor will match all new monthly recurring donations, but only if 75% of donors upgrade to a recurring donation today.
Terms and conditions apply.
Make a monthly recurring donation on your credit card. You can cancel at any time.
Make a donation in honor or memory of:
What kind of card would you like to send?
How much would you like to donate?
  • $25
  • $100
  • $300
  • $25
    each month
  • $100
    each month
  • $300
    each month
  • $
gift Make this donation a gift, in honor of, or in memory of someone?