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.
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.
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?
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.
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.
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*.
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.
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.
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