Blog: Volunteers at the heart of the Mulago Palliative Care team

Ian Robinson
31st March 2020

Cairdeas’ main partners in Uganda are the Palliative Care Education and Research Consortium, a partnership that has been strong since its inception over 10 years ago. PcERC is a small and dedicated team based at Mulago Hospital in Kampala. As well as the main staff team, PcERC is supported by a team of dedicated volunteers. The volunteer team is coordinated by Toko Friday Santiago, a former volunteer who is now a Cairdeas Scholar studying a BSc in social work. Alongside his studies Toko acts as PcERC’s volunteer coordinator.

Two of the longest serving volunteers are Vicky and Ronald, who have both been volunteering for 6 years. Ronald and Vicky come into Mulago Hospital for two half-days per week. Their role is to identify the social and spiritual needs of the palliative care patients being seen by the PcERC team and offer support and care to address these needs. This support could be in the form of exercises for the patient to do, cleaning or bathing, taking patients to investigations and feeding back to Toko and the PcERC team any concerns they might have. As well as this practical support, the volunteers may simply sit with a patient, listening to their stories, and spending time with their families. Vicky explains how she sees her work as going beyond what people expect, whether they say thank you or not. “It’s about passion and working for God” she explains, “Caretakers might leave and a patient needs companionship… If you provide a patient emotional support, you will see a benefit in their physical health”. Caretakers are often family members of the patient who have to take care of the practical needs of the patient.

For a time PcERC had a comfort fund which allowed them to provide financial support towards medicines and investigations in situations where a patient was unable to afford them. Unfortunately, the team’s resources are too stretched to offer this support service anymore, but they are well integrated within the network of organisations in the hospital. Volunteers are able to liaise with other organisations such as Caring Hands to provide this support to patients, though this NGO is only linked with the main hospital and not the Cancer Institute where many of PcERC’s patients reside.

Each year, the team of volunteers are trained by Mike and Liz Minton who equip them with the skills needed to provide spiritual and psychological support to those living with life limiting illness. The team also receive support from a pro bono legal team who may need to help out in situations where there’s a danger of a patient losing their property.

Outside of their volunteering, Vicky owns a business and Ronald works for a children’s NGO. Ronald explains that his ambition is to study a BSc in social work. They explain that the greatest challenge of the role is how they will build up rapport and even friendship with a patient, then they may come in one day to find the patient has died or been discharged. When asked why they offer their time to care for these patients, Ronald shared, “at the end of our conversation, a patient may ask ‘will you come back tomorrow?’ and this gives me joy”. Vicky said, “I feel complete. It is the opportunity to give to others what God has given me”.

Since I met with Ronald a few months ago, he was diagnosed with cancer just a few weeks before his wedding. Thankfully, he was able to get married and recieved treatment, though this is still ongoing. Even small procedures in Uganda are expensive and, as a dedicated PcERC volunteer, Cairdeas have been supporting him through this time. If you would like to read more about Ronald's story and if you would like to offer your support, you can do so by clicking this link. 

Volunteers at the heart of the Mulago Palliative Care team

Volunteer coordinator, Toko (left), with volunteers Vicky and Roland