Palliative Care: A Voice to Lead

Vicky Opia is  executive director of Peace Hospice Adjumani, a senior nurse (MOH) and the district focal person for palliative care, Vicky coordinates palliative care programmes across the District. Over many years of working with the University of Edinburgh and Cairdeas teams through THET funded partnerships, Vicky was in the first cohort of Ugandan nurses to receive palliative care leadership training. Since then she has become a mentor for the second cohort of leaders as well as local lead for the partnerships latest project in refugee settlements across Adjumani District, funded by Johnson & Johnson through the THET managed Africa Grants Programme.

“Growing up I cared for my grandmother who was blind, it was hard work but I enjoyed it so much I decided I wanted to become a nurse. I was actually the first in my district to train as a palliative nurse specialist!

Adjumani has a population of 432.480 of which 260,000 are south Sudanese refugees (source OPM 2015). Our community has been so welcoming but it has its challenges, providing healthcare is one of the greatest problems we face at the moment.

Through the training, I have learnt so much about leadership and the skills I need to be a good manager. From time management to delegation and conflict resolution I am now confident in my skills as a leader and I am proud to be a champion for palliative care. I am even on the radio now once a week to talk about refugee issues and the importance of palliative care in the community, encouraging families to recognise pain and know that there is treatment available for them.

Recently my leadership skills were put to the test when I met a young girl suffering with retinoblastoma. We found her abandoned in the ward one morning. She was in so much pain and I was glad to be able to prescribe her morphine which calmed her down and relieved a lot of her suffering quite quickly. Several hours later her mother returned explaining her fear of how the community might treat her daughter and not knowing how she could help her. I sat with her and explained her daughter’s condition and the use of morphine and medication could help reduce the pain. It was difficult at first because she was scared and didn’t understand the diagnosis but I remained calm and used my skills to recognise the best way to explain the situation to her. They left the hospital later that day and come back regularly for check-ups, I look forward to seeing them.

Much of my work is carried out within the refugee settlements as many of the Ugandan community members have come to know about palliative care through the Hospice, and the radio show already. It is often new to the South Sudanese community and we have had to work hard to build trust within the refugee settlements, with all they have gone through they are reluctant to trust outsiders and even struggle to trust those within the South Sudanese community. One of the ways we are helping to change this is through the village health teams (VHTs). The VHTs are the first point of contact for many with the health related issues, they provide baseline care. Over three days we trained 75 village health teams on how to identify patients in need of palliative care and how to refer them on to the health facilities and Hospice when necessary. The most special element of this training was that 99% of the trainees were South Sudanese. Initially we struggled to overcome cultural differences but again through my training with the UK colleagues we found ways around the bias and develop new understandings of pain management and end of life care. I also found that religion and the backing of local leaders was key to the success of our training and so I now go to their church to pray with them often and discuss the issues the refugee community is facing.

The partnership has worked because the training was a reaction to the actual circumstance in which we work. With the Peace Hospice leading on the identification of the training needs and the community gaps, the partnership has been built on local needs and uses local networks to ensure its success. I have also continued to work with the Ministry of Health on health care within the refugee settlements and this meant that there is real alignment between palliative care and government responses.”

I acknowledge the efforts of Dr Mhoira Leng and Prof Julia Downing for nurturing me through the leadership skills and THET project, which has regularly brought change among host and refugee’s community i.e. trained health workers integrating palliative in daily activities, increase demand for palliative care, Morphine prescription and utilisation, peace hospice participating in interagency meetings, testimonies by patients and families. This change is expected to attain a ripple effect through holistic management of palliative care cases across my region and country at large.