A Bold Step Towards Compassionate Community

On our 10th anniversary, Rachel House added bold strokes to the Palliative Care Ecosystem “tapestry” we have helped established in Indonesia, with the dream of making palliative care accessible and available for everyone living with life-limiting conditions. In 2016, our work and the influence of our work reached key stakeholders at all levels of the health system, including the prison hospitals and the School of Public Health, winning their support to bring us closer to the vision that no child should ever have to live or die in pain. 

Nurse and Patient

Nurse Yuni visiting her patient at home

Delivering Compassionate Care (Home-Based Pediatric Palliative Care Service)

We look back on the 10-year journey and are humbled to have been given the honour of caring for over 2400 children living with cancer or HIV and their families, providing them with compassionate palliative care and support during the most challenging time of their lives, helping alleviate their pain and suffering.

 

Building a Compassionate Community

We strongly believe that skilled and informed compassionate community members are an essential component to ensuring quality care for people living with chronic and life-limiting disease at home. Harnessing the spirit of gotong royong (collaboration) that is deeply ingrained in the Indonesian culture, Rachel House’s Community Network in Palliative Care (“CNPC”) Program has to-date successfully trained over 2100 community volunteers in basic palliative care skills and knowledge.

Monthly meetings are convened by Rachel House to forge strong collaborations between CNPC-trained community volunteers and health professionals in the Primary Health Clinics. As a result, multiple teams of community volunteers are now active and vigilant in making sure that no one in their community is left alone to suffer at home without care and assistance.

 

Community

CNPC-trained community volunteers in action

 

Nurturing Compassionate Palliative Care Professionals

The Clinic-in-a-Box fully accredited training program for nurses has completed its 2nd year, providing palliative care and homecare skills to now close to 100 nurses and nurse lecturers from some of the largest private and public hospitals and universities in Indonesia. The Clinic-in-a-Box training program is a critical component in Rachel House’s goal of establishing a palliative care ecosystem in Indonesia, to ensure that patients can be provided with compassionate care throughout the health system.

 

Clinic-in-a-Box in its 2nd year, nurturing compassionate nurses

Clinic-in-a-Box in its 2nd year, nurturing compassionate nurses

The surveys conducted to evaluate the effectiveness of the training program showed increased knowledge in palliative care skills in all the participants, particularly in the areas of pain assessment and management, and increasingly favourable attitudes towards a range of key concepts in palliative care including the delivery of bad news, caring for dying patients, administering morphine and patient referrals. The results of the surveys indicate the overall effectiveness of the training in improving the confidence of the nurse participants in negotiating complex issues in palliative care.

 

The 1st fully accredited Pediatric Palliative Care training in collaboration with The Cincinnati Children's Hospital & ICPCN, with the support of our young volunteer doctors

The 1st fully accredited Pediatric Palliative Care training in collaboration with The Cincinnati Children’s Hospital & ICPCN, with the support of our young volunteer doctors

In collaboration with Singapore International Foundation, Cancer Foundation and the Jakarta Provincial government, Rachel House continued to run the 3-year palliative care training for 80 medical professionals from 12 District and National hospitals in Jakarta. In November, we led a roundtable discussion facilitated by Dr Mark Meyer from The Cincinnati Children’s Hospital and attended by the medical directors and pediatricians from the 12 public hospitals, to discuss the challenges faced by each hospital in the implementation of palliative care. Following the success of the exchange, the roundtable will continue on a quarterly basis in 2017.

 

Rallying Support from Key Stakeholders

From outside the conventional health system, the Directorate General of Corrections, Ministry of Law and Human Rights extended an invitation to Rachel House to provide guidance on the national guidelines for palliative care in prisons and prison hospitals.

2016 also saw active training and roundtable discussions organised to engage medical and nursing schools and public health faculties of major public and private universities such as Universitas Indonesia, Universitas Padjadjaran, and Universitas Muhammadiyah Yogyakarta to build a body of research that will strengthen the case for palliative care inclusion in the health system.

 

Planting Seeds of Compassion Early: Medical and Nursing Students

To ensure a long-lasting impact in the health system, we are working to nurture a new generation of medical professionals who will be able to serve their patients with compassion and equipped with impeccable clinical skills. In 2016, Rachel House expanded its training efforts to include medical and nursing students, planting the seeds of palliative care values early in their career as health professionals.

We ran one-day introductory workshops for nursing students at Bani Saleh Nursing College in Bekasi, West Java, and Universitas Muhammadiyah Yogyakarta in Central Java, and provided palliative care training to aspiring doctors at YARSI Medical College. The growing interest in palliative care amongst medical and nursing schools have seen requests for Rachel House’s participation well into 2017.

Rachel House has also welcomed fresh graduates from medical schools as medical interns in our service. The greatest impact for many of these young doctors has been when they witness the patients in the intimacy of their homes, bringing the doctors face-to-face with humanity. 

 

Public Advocacy

The Living Wall is a Rachel House initiative designed to engage youth and students in a global campaign to increase the awareness of the plight of children living with life‐limiting illnesses such as cancer or HIV and to improve their access to pediatric palliative care. Nearly 20 schools nationwide have participated and launched the wall in their schools. We continue to drive the campaign through The Living (virtual) Wall (http://thelivingwall-id.org/) and social media (Facebook, Instagram, and Twitter).

On June 5th, The Living Wall presented at the Car Free Day on the main thoroughfare in Jakarta, reaching hundreds of people on their Sunday morning stroll or run.

On June 5th, The Living Wall presented at the Car Free Day on the main thoroughfare in Jakarta, reaching hundreds of people on their Sunday morning stroll or run.

In October, on the World Hospice and Palliative Care Day and  to celebrate the 10th anniversary of Rachel House, we shared our work on a live radio interview at Kantor Berita Radio. The show was distributed and broadcasted to hundreds of radio stations throughout Indonesia. For more information on all the publications, please click here.

It has been a fulfilling decade for all of us at Rachel House. We know that none of this would have been possible without our faithful supporters. For all this and so much more, we are eternally grateful. Thank you for helping us add life to the children’s remaining days.

A Light of Hope from the Community

 

In 2013, we began our efforts in bringing people together to care for those who are ill in their community. Today, Community Network in Palliative Care (CNPC) has spread across North Jakarta, where women, youth, community healthcare professionals, and Rachel House nurses work hand in hand to ensure that every child can enjoy their lives to the fullest. Watch Rachel House’s HOPE video above, a beautifully created by our friends at Anatman Pictures, to see these everyday heroes in action!

My diary as a volunteer at Rachel House (by Gemma Rhodes)

“I have started this diary to record as accurately as possible not only what I have seen at Rachel House but the way it has struck me emotionally. I first got involved with Rachel House because, after working in the corporate world for seven months, I found that I had developed a desperate need to find and do something more than purely continuing to work in a capitalist capacity without even considering what was going on in the world outside of glass walled offices. It was my dad that put me in touch with one of his old school friends, Lynna Chandra, a lady who founded a pediatric palliative care hospice in Jakarta, and suggested that I contact her asking if I could help out over the summer. It is thanks to Lynna that I have been able to see and experience the following events and I hope that I will be able to give you an insight into some of the amazing work that she and her team perform.”

 

Building the service

As we continue the journey deeper into the world of hospice care, and having cared for and accompanied 9 little souls in the last days of their journey, we find the continuous need to reinforce our medical team’s knowledge of palliative care – an area of medicine that is relatively new and not taught in Indonesia. This has led us to source trainers from our neighboring countries who have volunteered their time and skills to guide our team and our community in palliative care.

Training & Skills Development

Visiting Palliative Care Nurse Educator

Jan with Betty, Betty's father and Rachel House team

In February, a highly experienced palliative care nurse and nurse educator, Jan Phillips, spent 2 weeks with our team. While Jan’s home is in New South Wales (Australia), she has committed a significant amount of her time in the past 5 years volunteering to Hospis Malaysia in Kuala Lumpur. Prior to that, Jan was working in Pakistan at the Shaukat Khanum Memorial Cancer & Research Centre (“SKMCH”), assisting in the implementation and development of SKMCH’s first Palliative Care Team, and establishing the Palliative Care Training programme to be incorporated into the hospital’s curriculum for nurses, doctors and allied staff.

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The year in review

As 2008 comes to a close, we look back to give thanks for the celebratory moments and blessings of the past 12 months, and review the challenges that came our way to remember the lessons learned.

Operational Review

First batch of medical team recruited

First batch of medical team recruited

The first 6 months saw the team busy with preparations for the launch of our first inpatient service in a location which subsequently fell through. However, none of the work completed under the guidance of Dr Lily Soehartono went to waste. The team of nurses and doctor she recruited re-organized themselves quickly to launch Rachel House’s home care service for children with cancer.

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First inpatient pediatric palliative care service launched!

First Inpatient Pediatric Palliative Care

Rachel House’s first inpatient pediatric palliative care unit was launched on 1st December 2008 after a journey which has taken us nearly 2 years and countless hurdles, challenges & heartbreaks.

Inpatient Pediatric

 

The inpatient facility begins modestly with 3 third-class beds in a ward within the premises of RS IMC, a general hospital located in Bintaro (South Jakarta). Here, we will begin caring for children with terminal cancer and HIV.

 

 

The 2-short weeks leading up to the launch of our service were hectic but heart-warming times. Rachel House’s faithful supporters rallied around us with help, ranging from transport assistance, laundering of bed sheets and blankets (donated by Mandarin Hotel) and donations of children’s clothes and toys to renovations and painting of the ward to get us ready for the launch.

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Generosity of Spirit

The last 5 months have seen movement and changes within Rachel House. We have collected many committed and wonderful volunteers along the way and gained momentum in raising community awareness. At the same time, we have had to learn several harsh lessons which I hope have made us stronger and a great deal more realistic.
Updates

    • On-line donation – Sponsored by American Express

      Rachel House’s friends and supporters can now donate on-line with American Express. A wonderful facility offered to us at no charge by American Express! download form

    • 60-bed pediatric hospice in Cibubur – progress update

      With the help and guidance of Dover Park Hospice (Singapore) and Mercy Centre (Bangkok), our architects are finalizing the 4th draft architectural drawings for the 60-bed pediatric hospice in Cibubur, the first of its kind in the region!

      Ong Santosa and Winnie Alamsjah, the incredibly generous and highly talented architects who have agreed to take on the project as a gift to Rachel House, have been working with our Construction Committee since June on the architectural plans for the first stand-alone hospice in Indonesia. We are hoping to break ground and begin construction as soon as the all the licenses and documents are in order.

    • Pilot Project – issue of location

      We have been on the search for a small property to rent for our pilot project, but major obstacles remain.

      The main obstacles we have encountered are:

          1. Owners’ reluctance to rent the property to us once they discovered RH’s activities
          2. Neighbours’ objections, which meant that “ijin lingkungan” (approval of the community”) is
          not possible to be obtained for our operations
        3. Ketua RT (community head) objections

      But after all the months of hard searching and rejections encountered, we may finally be getting closer to finding a community that is more tolerant and accepting of our cause. We hope to be able to announce the good news in the coming days.

    • IT solution

      Two 14-year old boys dedicated their summer holidays in July to help build our Linux database system!

      Although schools have now resumed for them, Nicholas Hanley-Steemers and Forrest York are both still fully engaged and involved in the building of our systems! Most importantly, these amazing young volunteers have the total and complete support of their parents, who are guiding them behind the scenes to ensure executions of the projects go smoothly.

      Through these young and passionate volunteers, their schools and friends are also beginning to learn about Rachel House and are exploring ways to give us their assistance. The ripples of goodwill are spreading!

      This is exactly what we have prayed and hoped for, that children will be inspired to help other less fortunate children through Rachel House – that we will be able to inspire in children a sense of awareness for their community.

    • Networking

      Rachel House took part in the CHI (Children Hospice International) 18th worldwide congress in August.

      CHI (Children Hospice International) 18th worldwide Congress in Singapore

      We presented Rachel House to the worldwide congress of pediatric palliative care experts on 9th September. At the conference, we gathered pledges of assistance from numerous pediatric palliative care experts from around the world, ranging from Australia, South Africa, and the United States to Belarus. We will be looking at the possibility of training our senior nurses at the children’s hospice in Melbourne (the only country with pediatric hospice in the region), and arranging for pediatric HIV experts from South Africa to train our staff in Indonesia.

      APHC 2007 Conference in Manila

      We will be sponsoring a nurse from Carolus Hospital in Jakarta to take part in the Asia Pacific Hospice Palliative Care Network in Manila in September. Bernadette Marheni (Henny) is currently working (as a volunteer) to help us with the recruitment of nurses and babysitters.

Recruitment

We have begun the recruitment of nurses and babysitters! So, if you have contacts to any compassionate caregivers, please do refer them our way!

Recruitment of senior nurses is currently in progress.

Nurses

The first major obstacle we have encountered is the total lack of knowledge of “palliative” care amongst the nurses in Indonesia. We are starting from the most basic step: training of our interviewers in the basic knowledge of palliative care. A long road, but step by step we are getting closer to our dream that “no child should die alone, in pain and without love”.

Babysitters/caregivers

We are exploring babysitters training program at Carolus for the babysitters we hire. The alternative may be to hire babysitters from other cities in Indonesia – a recommendation from an orphanage we work closely with, Mekar Lestari, in BSD.

Training program

Palliative care is not currently included in the curriculum for nurses in Indonesia. This is obviously a serious problem for us. We are exploring the possibility of working with Flinders University from Australia to consider collaboration with universities in Indonesia to begin palliative care modules for nurses and caregivers.

Last year we sponsored a doctor from Indonesia to be certified by Flinders University in Palliative Care. Something we would like to continue doing to ensure the availability of palliative care resources in Indonesia.

Fundraising

While we are focusing our efforts in setting up the Rachel House operations, our community of friends and supporters have rallied behind us with incredible gusto with fundraising ideas and events. We are truly grateful for this incredible generosity of spirits.In the next few months, there will be several fundraising events organized by friends and luxury brands for Rachel House. To name just a few that are “brewing” in the pot:

  • Tod’s Charity Shopping Weekend on 30th November

    Tod’s will be holding a charity shopping weekend on 30th November – 2nd December in its Plaza Indonesia and Plaza Senayan stores. 10% of the proceeds from the weekend sale will be donated to Rachel House.

    In addition, an “iconic” bag will be auctioned during the weekend, where 100% of the proceeds will be donated to Rachel House.

    A tea party will be held on the 29th November to launch the weekend charity sale. Watch this space for more information!!

  • Fashion Show

    Our fundraising team (our “angels”) is working with the renowned fashion designer, Ari Saputra, to arrange for a fashion show in November where part of the proceeds from the sale of certain seats will be donated to Rachel House. More details of the fashion show will be provided in late October.

    As you can see, the past 5 months have had their ups and downs. We are indeed blessed to have been surrounded by wonderful people who have cheered us on when the road is rough and patchy. I remain grateful and humbled by the generosity of spirits in the people around us.

 

The Inaugural Fundraising Gala Event

The Inaugural Fundraising Gala Event

The evening of December 7th 2006 was a truly moving moment for many who have journeyed with us from the time Rachel House was a mere dream. On that evening, the dream was passionately shared by 510 guests who attended the event; and in that moment, we knew that we were one step closer to bringing the vision that “no child should die alone” to reality.

A “Call to Action” by the ex Chairman of Unilever Indonesia, Mr. Nihal Kaviratne, reiterated clearly the purpose for the evening which was to seek support for a private partnership to build an in-patient hospice for children in Indonesia, where palliative care will be provided to children ravaged by cancer and AIDS. And that, as Mr. Kaviratne said in his speech, “rather than being abandoned, such children should be given hope and the will to live. From this small beginning, it is our hope that one day, as community and support awareness grows, children with HIV can be encouraged to lead purposeful lives, and meet death when it comes with dignity.”

Mr. Kaviratne closed his speech by urging all who were present that evening to pledge their support for the cause and make a difference. “I have no doubt that you share a collective urge to do some good and make a difference. Your presence here tonight is proof of this. If you are willing then, let us together lay the small foundation stone of Rachel House, let us support its community of dedicated workers, let us learn from its birth and study its growth, let us help them add life to the remaining days in the lives of these children”

The evening raised over USD 300,000. Our grateful thanks go to our corporate sponsors Piaget, The Time Place, Coutts Private Bank, Metro, Moët Henessy, Tod’s, Leo Design and Art Explore. And to our faithful supporter and media partner, Prestige Indonesia and DestinAsian Group, without whom the evening would not have been possible. And to our wonderfully generous donors, we are humbled by the show of faith and confidence bestowed upon us.

The journey has just begun. The team at Rachel House will commit to keep our intentions and vision clear at all times: that we are here to serve the community that needs our help so that no child should die alone, unloved and uncared for.

We were truly blessed to have the wonderful support from everyone on our inaugural fundraising evening. We would like to invite all to travel this journey with us, in the quest for a better world – not just for some of us, but for all of us.

 

Administration Office

On January 15th 2007, the Rachel House administration team moved to Graha Indramas in the Slipi area. We are grateful to Jimmy Masrin, a member of the Board of Trustees (“Pembina”) for the generous assistance he and his team have given us.

 

Project Manager

In late March, we will be adding to our team a Project and Operational Manager who will oversee the setting up of our first hospice in Jakarta. Anil Sharma is currently in the UK visiting hospice facilities such as Helen House and Rachel House.

 

Land in Cibubur

We are finalizing the purchase of a property to build a 60-bed in-patient hospice facility. We hope to soon be able to announce the good news when the purchase is completed and the construction plans begun.

 

Invitation to participate and contribute

As we set up our administration office and begin to prepare our first hospice, we continue to seek assistance from our friends and family for donations of office furniture and equipment, such as desks, chairs, computers and printers to allow us to channel as much of the funds donated to us to the care of the children.

Finally, we are planning to have our first 10-bed hospice facility ready for operation by the 2nd quarter of this year. Our biggest challenge continues to be finding a home for this facility. We would like to take the opportunity now to seek your assistance, and your generosity, should you know of or own a property that is perhaps available for us to rent for a period of time to allow us to begin our operations.

It is an exciting time in Rachel House’s journey. We remain grateful for our friends’ and family support and your faith in us.

 

Yayasan Rumah Rachel was Established

Yayasan Rumah Rachel was established!

We are pleased to announce that on October 12th 2006, Yayasan Rumah Rachel (“Rachel House Foundation) was officially established.

Our grateful thanks to Didi Dermawan and his team at Dermawan & Co. for making the “almost impossible” possible, and for patiently guiding us through the many unfamiliar territories. Most of all, we are grateful for Didi’s generosity and tireless support to all of us at Rachel House.

Placed on our Board, we have been blessed with a group of trustees and advisors who have offered their time freely to support and direct the work of Rachel House. The Trustees and Advisors were chosen, first and foremost, for their integrity and generosity of spirit followed by their passion in our vision that NO CHILD SHOULD DIE ALONE.

 

Our very first office in Kapuk

We have an office!! A 300-sqm shop house located in Kapuk has been generously offered to us by PT Mandara Permai. We are truly grateful for their generosity and kindness.

With this office we will be able to, for the first time, gather our team together and operate from one location! A relieve for all of us, as we have for the past 10 months been “camping” from YCAB’s offices. Having said that, I have no doubt however, that Wulan and Ernie will have tremendous separation jitters when the time comes for us to finally leave YCAB’s offices – which have been a wonderfully warm, supportive and welcoming home for all of us!!

Renovation of the office will begin soon under the guidance of the talented architect Ong Santoso, who has generously offered his time and creativity to the project.

 

First fundraising event – by Chris and Bernice Franck!

A huge thank you goes out to Christopher and Bernice Franck for choosing to contribute Chris’ 40th birthday celebration to Rachel House. And what a celebration it was!!

Chris and Bernice told us that Rachel House “is a natural cause for us to support”. Because as parents we are moved by its focus on terminally ill children and making their precious shortened lives worth living by surrounding them with care, dignity and love. And also because this is the story of a great friendship between two special people. One whose human qualities and spirit embodies Rachel House’s values; and another who founded Rachel House to make a difference for those who are the most innocent as well as to keep her dear friend’s qualities and spirit alive. And finally, because we are so blessed as individuals in our own lives and so blessed to have been touched by the friendship between Rachel and Lynna.

The evening raised over S$ 6,000 from friends and families who attended the Carnival party, where clowns, pop corn and marshmallow filled the evening with glee and joy. How appropriate for Rachel House’s very first fundraising to be from friends and families, where some can even testify how their lives had been touched by Rachel Malcomson’s life, and the joy she radiated through adversity!

We would like to take this opportunity to express our heartfelt thanks to the generous contributions from Chris and Bernice’s guests.

 

Inaugural Charity Ball at the Ritz Carlton Indonesia

Finally, on the eve of the inaugural charity ball on December 7th 2006 at The Ritz-Carlton Hotel in Jakarta, we would like to say thank you to all our friends and families, our dedicated volunteers who have given us their time, support, encouragement, guidance and advice through the last 18 months. Without you, Rachel House would not have been possible.

From what was born out of a dream and a conviction 18 months ago, we are now just steps away from setting up our first operation – the first purpose built children’s hospice in Indonesia.