Establishment of Children's Palliative Care Foundation
Established in 2018, Children’s Palliative Care Foundation (CPCF) is an entity owned by Children’s Cancer Foundation (CCF). Since 1999 CCF has been the first and the only organisation in Hong Kong providing palliative and home care services in Hong Kong, extending our service to non-cancer life-threatening patients.
Starting off with two registered nurses, CPCF has now grown into a diverse team comprising nurse specialists and social workers, and our number of partners has increased from five public hospitals under the Hong Kong Hospital Authority to a total of 13 hospitals in Hong Kong with paediatrics units. The establishment of CPCF lays a remarkable milestone for CCF in providing palliative care service for child patients.
The Beginning of CCF’s Children’s Palliative Care Service
Molin Lin (Professional Services Manager, Children’s Palliative Care Foundation)
Twenty-eight years ago, in an afternoon, three members of the Children’s Cancer Foundation (CCF) came to visit me in the hospital, right after I donated bone marrow to a young patient. I was deeply touched by their heart-warming gesture and that was my first encounter with CCF. They had caught my interest in knowing more about the Foundation’s work and services. It also kick-started my journey with CCF and its children’s palliative care services.
The decision in donating bone marrow to the child with leukaemia was with the hope that I could help him in his treatment. I thought it was amazing that two persons, not blood related, do not even know each other could have a perfect match in blood type. Hence, it did not take me long to make the decision. In those days, bone marrow transplantation was an innovative treatment not known to the general public. It was not easy to wipe away the fears of my family and to gain their support on my decision. I successfully donated the bone marrow and became the first unrelated donor donating bone marrow to a child patient in Hong Kong. I felt immensely grateful, not for the result of the bone marrow donation, but how the experience had changed my life which was totally unexpected.
After learning more about the Foundation, I joined as volunteer and subsequently became a member. As a nurse, I understand that for a successful bone marrow transplantation, the patient needs specialised medical and nursing care. In 1993, hoping to learn more about the nursing care for childhood cancer and bone marrow transplantation, I requested to be transferred to a paediatric haematology and oncology unit in the hospital.
In Hong Kong, on average we lost about 50 children to cancer every year. However, the special needs of these advanced cancer patients and their families were not properly addressed by society and the healthcare system at the time. In the summer of 1997, I discussed with the Founding Chairman of CCF, Ms Miami Wu on the feasibility of developing children’s palliative home care (CPC) services. She also recognised and agreed on the importance and urgency of filling this service gap. After two years of tremendous hard work and dedications, our dream finally came true. CCF’s palliative and home care service for young and adolescent cancer patients was officially launched in November 1999. It also marked a new chapter of my professional career.
Our team of three nurses, embracing the "child-centred and family-oriented" concept of children’s palliative care (CPC), provided seamless 24/7 home care services for young patients with advanced cancer. In 2011 with limited resources, we launched a pilot project serving non-cancer seriously ill young patients. With the collaboration among families, hospitals and schools, we have successfully served more than 80 non-cancer patients over seven years.
In 2018, well aware of the dire needs of children’s palliative care in the community, we established the Children’s Palliative Care Foundation (CPCF), an entity solely owned by CCF. With our growing team from three nurses to a team of ten professionals including nurses and social workers, we aim to serve more seriously ill children and their families. We hope our newly established CPCF can raise more public awareness on the importance of children’s palliative care and would encourage the public to join hands with us to support these less fortunate children and families.
In the past 21 years, we have been providing professional holistic care to the patients and their families at every stage of their journey. We manage the symptom and discomfort of the patients at home to reduce their number of admittance and length of stay in hospital so they can spend more quality time at home with their families. But, more importantly, we provide psychosocial support to the families throughout their arduous journey, assisting and helping to relieve the burden of the caregivers. We also provide bereavement care after the passing of the child.
The home care and palliative care services established by the Children’s Cancer Foundation is a pioneer and milestone of the development of children’s palliative care services in Hong Kong. Our service data proves the huge service demand, and our service model also provides reference for the Hospital Authority to develop their children’s palliative care services.
There are still a lot of challenges ahead the development of children’s palliative care services in Hong Kong which require many dedicated individuals to put forth efforts to overcome them and achieve more. Nonetheless, I am delighted to see what we have accomplished today I am always grateful for the support of CCF and the child who matched my bone marrow.