Abstract: Public awareness for rare diseases has increased in recent years in Hong Kong as patients suffer from long diagnosis process, misdiagnosis and limited financial subsidy for expensive medications. These challenges negatively affect patients’ and caregivers’ quality of life as they continuously suffer from a prolonged period of clinical investigations by different specialists before a diagnosis can be made. The costly and time-consuming process, as well as the lack of experienced clinical genetics professionals are major challenges of rare disease management in Hong Kong. The Hong Kong government adopts an approach of “case by case” instead of formulating a definition of rare disease. New regulations have been performed by the Hospital Authority such as increasing funding for Hong Kong Children’s Hospital for early detection and diagnosis, and review on drug formulary. International collaborations like research and sharing of information is believed to bring optimal benefits for rare disease patients and caregivers, as well as to promote best practices in policy field.
Abstract: Palliative care service is a growing trend for patients with terminal illnesses. The purpose of palliative care service is to improve the quality of life for the patients and their family by providing comprehensive care such as symptoms control, pain relief and counselling support. More and more people prefer to spend the final stage of their life in a comfortable environment with adequate care. Palliative care service in Hong Kong is inadequate and enhancement of the service is needed. This review paper aims to evaluate the current development of palliative care service in Hong Kong and suggest improvement of the service. Literature review of published research studies has been conducted. Compare to other countries or regions, the existing palliative care in Hong Kong is lagging behind the international standards. This study reveals that the system in Hong Kong is lacking of comprehensive policy, thus limiting the organisations to provide the service in small-scale operations, and resulting in fragmentation of the co-operation between the public and private sectors. Factors such as professional training, community engagement, culture and financial issues are affecting the adequacy of palliative care service. To facilitate the development of palliative care service for patients who are in need, initiating palliative care guideline, expanding professional education and training, increasing government funding to organisations that provide palliative care and increasing public awareness about the service are recommended.
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