Godfrey knew he wanted to become a nurse when his father became sick and he didn’t know how to care for him. Living in Adjumani district in Northern Uganda, Godfrey studied to be a nurse. His favourite part of the job was speaking to the patients, particularly those with chronic illness. These patients seemed to have a different perspective on life; a unique sort of peace. He took part in a palliative care leadership course in the district facilitated by Cairdeas. Godfrey now volunteers for Cairdeas partner, Peace Hospice Adjumani. Peace Hospice works to provide palliative care services in the refugee settlements and to host populations.

I met Godfrey on a recent trip to Uganda. As Operations Director of Cairdeas I had the opportunity to visit Uganda to meet partners, visit patients and gain a deeper understanding of how the work of Cairdeas is empowering communities to provide palliative care to those in need. 

I accompanied Godfrey to a home visit in Adjumani in Northern Uganda. Esther (name has been changed) was suffering from advanced cervical cancer. She was being looked after by her sisters and visited by the Peace Hospice team every two weeks. Esther was on high doses of morphine to manage the pain but was still experiencing some symptoms and side effects of the morphine. Godfrey gave Esther some advice on managing these symptoms, such as waiting an hour after taking the morphine and before eating to avoid nausea. As well as enquiring about her medication and symptoms, Godfrey checked in on the care Esther was receiving from her family and how she was feeling emotionally and spiritually. She explained that she was being cared for by her family, but also that she knew she wouldn’t have to feel the stress of loneliness because the hospice team will take care of her. Before we left Esther took the opportunity to practice her English with me. “At least I have laughed for today” she said to Godfrey in Madi as we left.

We then went onto the first refugee settlement, Pagirinya. Village Health Teams (VHTs) have been trained to identify patients with palliative needs and refer them to the Peace Hospice team. Godfrey and I waited under the shade of a tree as the VHT went to find the patient we were there to see. As we sat there, I was struck by how well established the settlement was.

Uganda has welcomed around 1.3 million refugees – the third largest refugee population in the world. A recent episode of the BBC documentary, The Displaced, followed Ashley John-Baptiste as he met some of the refugees settling in Northern Uganda. “Instead of fighting the tide of displacement, Uganda has become renowned for its welcoming refugee policies”. The settlements I saw weren’t dissimilar to the host villages – mud hut homes, vegetable patches, clothes hanging out to dry, goats and other animals running about. When being forced to leave one’s home, those crossing the border into Uganda are welcomed with a dignified space to set up camp until it is safe to return home.

The first patient we saw was a man with painful swelling in his legs. The swelling had started in his left leg and spread to the right. He was receiving pain killers from the Health Centre which is run by UNHCR – the United Nations refugee agency. He had been offered a biopsy but couldn’t afford the cost of the results. He didn’t feel he was getting any support from the community. “You are not alone, we are here for you” Godfrey assured him. The patient may be transferred to a hospital in the nearest city, but the Peace Hospice team will ensure he doesn’t slip under the radar and will support him in whatever way they can. Finance is often one of the biggest challenges in these situations, and unfortunately Peace Hospice itself struggles with this. As a key partner, Cairdeas hopes to be able to support them through joint funded projects.

The second patient, Pal, was a lady with advanced rheumatoid arthritis. Pal couldn’t stand without support from her daughter. She had recently been walking with a stick, but the stick had broken, causing her to fall and break her hip. Godfrey promised to help the family by sourcing a stretcher or wheelchair to make it easier to move their mother around. He prescribed some medication and wrote a note to the nearby health centre asking them to provide further support for Pal. “I will not forget mama, I will not leave her” Godfrey reassured Pal’s children.

It was an eye-opening experience visiting both the Adjumani host communities and the refugee settlements. I was given an insight into how a country can successfully welcome people who have had to flee their home countries, offering refuge and dignity in their displacement. It was wonderful to see the work of Peace Hospice and the support they are offering to those in need. They were able to offer assurance that the patients would not be left to suffer, treating their symptoms and seeking further health care from the relevant organisations. Godfrey gave each patient time and space to share their worries, making them feel cared for and valued as an individual.

Please remember Peace Hospice as they face the Covid-19 crisis. Adjumani hospital where they are based has confirmed a first case of the virus and, as yet, there is no evidence of it spreading to the refugee settlements. Executive Director of Peace Hospice and key Cairdeas partner, Vicky Opia has been appointed as the lead for psychosocial care at Adjumani Hospital. Our thoughts and prayers go out to Vicky, Godfrey, and all those working to care for both host and refugee populations in Adjumani at this time. 

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. 

Towards the end of 2019, a team travelled to Gaza to deliver teaching in palliative care to first year medical students and take part in the first palliative care conference to be held in Palestine. Among this group were Cairdeas Medical Director, Mhoira Leng, and Trustee, Elizabeth Swain. In this blog, Elizabeth shares her experience teaching palliative care skills in a war-stricken country and reflects on the role of compassion and humanity in dealing with trauma.

Dr Abdel’s Mum invited us all for tea at the family home in Gaza City just near the Commonwealth Graves Commission Cemetery. “Remember, Abdel, you are human too and so treat all your patients as you would treat me”. This is what she says to him each day he leaves the house to go to the hospital. What generous hospitality and what a delightful evening we had. Dr Abdel had been “lent” to us from the University as a teaching assistant but he did so much more and kept us out of trouble. He and his Mum made sure we sampled many of the delights of Gazan cuisine.

We shared his Mum’s good advice with the 132 first year clinical students at the Islamic University of Gaza who we taught for a week in palliative care. What a delight they were – keen, enthusiastic, hardworking and “big eyed” to have a team of 6 foreigners teaching them. Maybe it was the first time they had experienced working in small groups discussing case studies of patients with life limiting conditions, seeing patients on the hospital wards and considering spiritual as well as the physical and social concerns of their patients, and they responded enthusiastically.

Perceptive, sensitive and caring youngsters – a career in medicine ahead of them in a very tense part of the world where the care of trauma patients is more in demand than in those with palliative care needs. Their feedback of the values they had seen demonstrated in Palliative Care - love, joy, humility, justice, hope, empathy, compassion, team work, humanity, respect - brought US much joy and were hugely encouraging.

Mhoira, Alice and I were privileged indeed to be invited to take part in the first ever Palliative Care conference held in Palestine at which we all presented papers. We were part of a small cohort of overseas speakers and as such had very much front row seats in the conference hall which made us vulnerable to the many photographers in attendance!

Gaza’s population is made up of 70% refugees from the war of 1948 and their educational and health needs are the responsibility of the United Nations. I was delighted to go with a very senior nurse to visit a couple of the primary care centres. There is a keenness to explore the possibilities of Palliative care but a funding crisis in 2018 prevented progress in this. Janet – one of the team spent a happy and productive time talking with a group of nurses keen to know much more.

It is a troubled part of the world and care of trauma casualties takes a lot of resources, but in terms of pain management and compassion there are transferrable skills and attitudes.

Mhoira and her co-authors Rachel Coghlan Omar Shamieh, Khamis Elessi, and Liz Grant bring this out in a letter recently published in the Lancet and suggest, too, a role in conflict management. (Read the full letter here)

“To claim that palliative care alone could be the solution to the conflict in the Gaza Strip and other conflicts like it, which often seem like intractable political calamities, would be naïve and careless. Yet we do believe that the compassion and humanity intrinsic to palliative care affords it a powerful role in working towards conflict resolution.”