How palliative care policy is formed: a snapshot from Uganda

Categories: People & Places.

June 16, 2016 – Reaching the African Palliative Care Association’s (APCA) office in Kampala was facilitated by Dr Emmanuel Luyirika, the organisation’s executive director, who personally picked me up from Busoga to drive me to APCA’s headquarters. 

As we travelled through town, we informally introduced ourselves. Too humble to his affiliations, he fondly reminisced his academic experiences in South African Universities – Witz and Stellenbosh and his rigorous research in South African HIV Prevention Policy and its implementation in South Africa.

Soon after reaching the APCA office and stopping for a bite of chapati (Ugandan flat bread) and a refreshing coffee, we were into business. As Dr Luyirika took me through APCA’s pan African mandate and interventions, he explained, 

“There is a whole spectrum beginning from policy advocacy to community sensitisation. APCA has successfully advocated and collaborated to pass a palliative care policy in seven countries – Rwanda, Mozambique, Swaziland, Tanzania, Zimbabwe, Uganda and Botswana.” 

Continuing, he deliberated on the procedural components towards the formulation and passing of such a policy; specifically pertaining to the participatory involvement of multiple stakeholders – government decision makers, technical experts, researchers, the media and community level champions.

Firstly, he opined that more evidence is to be generated on the need for a country to have a palliative policy. Thereafter, technical inputs are sought from various stakeholders, both at the policy making and implementation levels. The next stage, is to conduct a situational analysis for policy making and gauging the policy environment in the country. 

The policy framework has to be complemented with operational guidelines and the resource mandate, clearly mentioning the accountability and funding charter. In Uganda, in formulating the palliative care policy, the Ministry of Health, Ministry of Justice, National Drug Authority, Attorney General’s office, Makerere University Medical School, civil society organisations and patients and caregivers played a key role. 

For policy approval in Uganda, he mentioned that the Ministry of Health, Ministry of Finance and relevant subcommittees also played a decisive role. For the palliative care policy, both APCA, Hospice Africa Uganda and the Palliative Care Association of Uganda (PCAU) were key in advocating for and facilitating the agenda. 

Frameworks and guidelines that aided in building research evidence included: The WHO’s palliative care public health strategy, WHO frameworks and guidelines, the African Union’s Common Position on Controlled Substances and Access to Pain Management Drugs, and The Global Atlas of Palliative Care at the End of Life. Simultaneously, advocacy management teams were created and civil society champions were mobilised to build a cascaded advocacy process.

On asking Dr. Luyirika about his thoughts on palliative care in relation to the cervical cancer prevention policy in Uganda, he mentioned that effective policy advocacy complements health systems strengthening and health promotion and also has manifold benefits, especially to women. Thus, palliative care needs to be integrated into disease interventions, including HIV, CaCx – or else, it is merely a patchwork approach rather than holistic healthcare. 

Even so, a policy’s operationalization in countries such as Uganda needs to be strengthened by improving healthcare governance and sustainable funding. It is equally pertinent to take into account resource requirements, infrastructure, drugs and supplies, and adequately trained and motivated healthcare workers.

Tapati Dutta, is a socio-behavioral scientist in community health and currently in her second year doctoral studies at the School of Public Health, majoring in Health Behavior and Health Policy. Her research emphasis on multi-level community engagement in cervical cancer prevention policies, addressing vaccine confidence challenges, particularly in resource-limited country settings; focusing on both, community perspective of this engagement as well as the indicators of engagement that are policy artifacts.

Prior to this, with her academic background in Social Sciences (M.A) and Population Studies (M.P.S), she has professional experience of 15 years with Indian organisations and bilateral collaborators in Kenya, Uganda and South Africa. Her focus has been using Dissemination and Implementation Models, advocating for receptive policies and prevention methods in the arena of sexual and reproductive health and HIV prevention. Her main interest areas are related to vaccine/prevention preparedness, public health policy making, policy environment, ethics and community engagement.  

Her visit to Uganda was part of an 11 week International Development, Project Design, and Implementation collaborative program of Advancing Community, Collaboration, and Training (ACCT), Indiana University, Bloomington, USA.

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