Nepal is an amazing country in many ways. Nestled in the Himalayas it boasts eight of the world’s fourteen highest mountains. Rising from the Gangetic plain, a few hundred metres above sea level in the south, to Everest, 8848 metres high in the north, it moves through multiple ecological zones – from steamy sub-tropical forest to icy arctic wastes, resulting in a huge variety of bird species. However, despite the great potential for tourism and being blessed with abundant natural resources (it has almost limitless potential for hydropower), Nepal is one of the world’s economically poorest countries.
When International Nepal Fellowship (INF) opened Green Pastures Hospital in 1957, Leprosy was endemic and caused much suffering with high levels of disability, social stigma and ostracism from the community. Whilst Leprosy remains an important health and social challenge in Nepal, thankfully the numbers contracting the disease have greatly reduced.
We will train volunteers in caring
Population health, in general, has improved with life expectancy rising from 45 to 69 years over the last 40 years, largely through better maternal and child health and a reduction in death from infectious diseases. However, as in other low and middle-income countries, increased longevity and lifestyle changes are leading to an increase in non-communicable diseases (NCD). More than 60% of deaths are from NCDs with increasing numbers of people living with disability from long term conditions. According to our modelling at any one time, around 120,000 people in Nepal require palliative care.
This demographic shift in illness requires a fundamental change in the focus of healthcare from acute illness to integrated chronic disease management – a particular challenge in such a low-income setting. In a recent survey of advanced chronic illness in rural areas, we estimated that around four per cent of the population are housebound with chronic illness, disability or age-related frailty. Despite government health posts in each village area, the majority of people in this group do not receive effective healthcare. They have difficulty getting to health posts due to rugged terrain and staff who provide care there lack training in chronic disease management. Such people become invisible and marginalized. Families struggle to care for them and according to Oxfam, girls frequently drop out of school to become carers.
Addressing these issues requires a holistic and community development type approach which will transform primary care and empower communities. Health care workers need to be trained and health care facilities need to develop systems and resources to deliver appropriate chronic disease management. Families need to be given the support in caring for chronically sick and dying members. At the same time, it is imperative to enable children and young people to continue in school and not drop out because of caring duties, otherwise, the cycle of poverty will continue.
In addressing these challenges INF, in partnership with international healthcare charity EMMS International, has established a palliative care and chronic illness unit at Green Pastures Hospital. Dedicated in November 2020 and now serving the local community, the unit will focus on clinical care, education and research, developing models of care which will enable integrated chronic disease management for rural Nepal. This represents an expansion of INF’s palliative care work which has been gathering pace over the last eight years involving: needs assessment research, developing training resources, including translating the Palliative Care Toolkit into Nepali, training numerous health care professionals and also training church members in basic compassionate caring skills.
EMMS International and INF Nepal’s next major project, ‘Sunita’ (‘Justice’), will be to develop a model of community primary palliative care and compassionate communities for rural areas. Working with Nepali development organisation HDCS, which runs the government Lamjung District Hospital and local Lamjung District health posts, we aim to develop a robust and appropriate health system for palliative care. In addition we will train volunteers in caring, modelled on the previous training developed by the Green Pastures Hospital Palliative Care Team and reported in e-Hospice in June 2016. We will work with school students promoting caring as compassionate action for all to be involved in, not just girls and work with schools to see how children involved in caring can be supported to continue their education.
The Sunita project is being backed by the UK government, with public donations to the ‘Every Girl Matters’ appeal being doubled until 19 February 2021. The campaign focuses on the role of palliative care in easing the burden of care from families and young girls in particular. With their loved ones well cared for, young girl carers are able to return to school and pursue their own dreams for the future. If you would like to be involved in helping us develop this compassionate programme, please donate to EMMS International at www.emms.org/everygirl
Dr Dan Munday, Adviser in Palliative Care to International Nepal Fellowship
Honorary Senior Clinical Lecturer, Primary Palliative Care Research Group, University of Edinburgh