Poverty shouldn't mean poor quality palliative care

The increasing commercialisation of health care, decreasing public spending on health and the introduction of expensive high technology interventions are making basic health care less accessible to poor people living with incurable and chronic diseases. An experiment in Kerala, India has been trying to address this problem through interventions by community volunteers.

Many people living with incurable and chronic diseases experience psychological and social problems. Because of this, eight palliative care initiatives were set-up in the Malappuram district of Kerala in 2000 to look at the existing institution-based model of care. The Neighbourhood Network in Palliative Care (NNPC) works to empower local people to plan and deliver services in their communities with the help of health care professionals.

Local people were brought together by four non-governmental organisations in Kerala to discuss the problems faced by patients with chronic or incurable conditions. Those willing to spend a minimum of two hours per week helping patients were given structured training, registered as community volunteers in palliative care and encouraged to plan locally relevant services. The basic 15 hours of training focused on the organisation of services, psychosocial support and basics of disease process.

Groups of trained volunteers are tied to palliative care professionals and health facilities in their communities. Action plans define individuals' and institutions' roles and responsibilities. This process has resulted in:

• a focus on home care with outpatient clinics and inpatient units in support
• attention to social and emotional wellbeing as much as physical health
• using local resources
• the building up of skills and confidence in the local community
• a network with more than 4,000 volunteers, 36 doctors and 60 nurses looking after 5,000 patients at any point in time. All the doctors and nurses in the network are employed by the community initiatives.

Within less than five years, the NNPC initiatives have:

• established more than 60 community based palliative care initiatives in northern and mid-Kerala covering a population of more than 11 million
• an estimated coverage of more than 70 percent in palliative care and long-term care in the region compared to a national average of around 1 percent
• raised more than 80 percent of the resources for the projects locally through small donations of less than 10 pence.

The NNPC is probably the first large-scale palliative and long-term care programme of its kind in developing countries. Its success has been achieved by health care professionals and local communities working together and has shown that sustainable good quality palliative and long-term care is possible with few resources.

Lessons from the NNPC include:

• People living with chronic debilitating illness need regular care for the rest of their lives. Home care and care in the community are the best ways of providing continuous support.
• Trained volunteers can play a major role in patient care if supported by health care professionals. The doctors and nurses in the group look after the medical and nursing care and link up with health institutions.
• Obtaining resources is not a major problem when a community owns the programme.

Suresh Kumar
Institute for Palliative Medicine, Medical College, Calicut 673008, Kerala, India
skumar90@hotmail.com

See also

Neighbourhood Network in Palliative Care (NNPC)
www.painandpalliativecare.org/nnpc/moreinfo.htm

Indian Journal of Palliative Care, Volume 11, Issue 1, 2005
www.jpalliativecare.com

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