Civil society petitions Kadaga over low budgets for palliative care

By Deo Wasswa

Eight leading civil society organizations working on Palliative Care, Health Rights and Budget Advocacy petitioned the Deputy Speaker of Parliament of Uganda on the low budgetary allocation for palliative care services in Uganda.

The organizations led by the Palliative Care Association of Uganda (PCAU) presented a joint statement at the Chambers of the Deputy Speaker.

While presenting the petition, Rose Kiwanuka the Country Director of PCAU who led the delegation said that Palliative Care is recognized as an essential service by the government of Uganda. She added that Palliative care is a component of the definition of Universal Health Coverage (UHC), which has a central place in achieving the Sustainable Development Goals (SDGs) by 2030.

Ms Kiwanuka noted that the World Health Organization (WHO) had defined Palliative as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and thorough assessment and treatment of pain and other problems, physical, psychosocial and spiritual. She noted that this unique service provides relief from pain and other distressing symptoms among patients but also affirms life and regards dying as a normal process.

On who needs palliative care, Ms. Kiwanuka mentioned that the World Health Organization had identified the diseases that require palliative care for adults and children to include; cancer, cardiovascular/heart, HIV/AIDS and liver, and kidney diseases, among others. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%) and diabetes (4.6%).

Ms. Kiwanuka pointed out that the provision of palliative care in Uganda began in with the establishment of Hospice Africa Uganda (HAU) in 1993 and that Uganda was viewed by the world as one of the countries with the best models of palliative care provision in Africa. Ms Kiwanuka thanked the government of Uganda for integrating Palliative Care in Uganda’s Health Sector Strategic Plans since 2004. She also thanked the Ministry of Health for establishing a Public Private Partnership (PPP) with Hospice Africa for the production of oral liquid morphine which is available for patients in need free of charge. Uganda was the first country in the world to allow specially trained nurses to prescribe morphine for pain control.

On access to Palliative Care Services, Ms. Kiwanuka noted that currently, only 11% of those who need pain control and palliative care access it in Uganda. She said that the country’s Health Sector Development Plan 2015/16 – 2019/20, showed that palliative care services were being offered in only 4.8% of the public hospitals in the country. She added that the 2017 Annual Report of the Uganda Human Rights Commission pointed out various gaps in the provision of palliative care services which included the following:

Uganda lacked a standalone palliative care policy to guide the implementation of palliative care services.

The public health structure emphasizes institutionalized care as opposed to home care which is the most suitable model for palliative care provision in countries like Uganda.

There was inadequate training of palliative care providers which was coupled with the fact that the public civil service structure did not recognize the few qualified health workers in the field of palliative care.

One of the petitioners Dr. Emmanuel Luyirika the Executive Director of The Palliative Care Association (APCA) informed the Deputy Speaker that whereas Uganda was the first country to start Palliative Care in Eastern Africa, the neighboring countries are making great strides. He mentioned that Rwanda and Tanzania passed their National Palliative Care Policies. He reminded the speaker that Uganda is a party to key international legal frameworks which called for superior investment in Palliative Care. He mentioned the frameworks to include:

The 2014 World Health Assembly Resolution on strengthening palliative care as a component of comprehensive care throughout the life course.

The 2017 World Health Assembly Resolution on cancer which commits Governments to provide pain relief and palliative care to their citizens.

The African Union (AU) Common Position on Controlled Substances and Access to Pain Medications which speaks to the availability of narcotic drugs and psychotropic substances to provide relief from pain and suffering associated with serious chronic illnesses.

One of the petitioners from the Initiative for Social and Economic Rights (ISER) Ms. Allana Kembabazi noted that Palliative care had not realized direct funding or vote in Uganda’s national budget. She said that in the Budget Framework Paper for the 2019/20 financial year, there were significant budget cuts that touch the provision of palliative care. She pointed out that the proposed Uganda Cancer Institute (UCI) budget for the FY 2019/20 was projected to decrease by UGX 30.561 billion (33.513%) from UGX91.192 billion in FY 2018/19 to UGX 60.631 billion. Ms. Allan implored the government to increase investment in health care which is a fundamental right to citizens.

At the same meeting Ms. Fatia Kiyange from the African Palliative Care Association (APCA) stated that in order to improve palliative care service provision in Uganda the civil society organizations recommend that:

Government fast tracks the development, approval and ensures funding for the implementation of the National Palliative Care Policy.

Government initiates steps to progressively realize direct funding for palliative care services in Uganda. There should be a vote for palliative care in the future national budgets of Uganda.

Government considers investing in human resources for palliative care by training palliative care providers at all levels.

The Health Service Commission and other relevant bodies should recognize palliative care as a medical, nursing and allied health workers specialty and therefore recruit and retain palliative care specialists in service at least up to Health Centre IV level.

While considering passing the National Health Insurance Scheme (NHIS) Government should ensure that the scheme covers all conditions that require palliative care.

Government considers deliberate funding to Private Not for Profit t Standalone Hospices to strengthen home and community care among palliative care patients and their families.

On his part, the Deputy Speaker of Parliament thanked members of the civil society for their thoughtfulness about such a pertinent issue; Palliative Care. He noted that he was glad that a team of committed palliative care practitioners chosen to bring this to the issue to parliament for attention. He said that parliament is committed to discussing such real-life issues which touch the core of humanity. He informed the members present that the role of allocating resources in the national budget rested with the President and that Parliament discusses the proposals made. He advised the Palliative Care Fraternity to prepare to engage with the process of budgeting for the next financial year. He pledged that his office would be fully supportive of the processes to ensure that Palliative Care services are funded by the government.