As I write this I am acutely aware the world has changed almost beyond recognition on the past few weeks. A pandemic much discussed in theory by the scientific world and the subject of movies has been unleashed by means of a tiny virus that has closed countries, pressed paused on economies, placed almost one third our world’s population into lock down. This outbreak has led to the deaths of tens of thousands…a number which is yet to rise.

In Uganda where I am also self-isolating and in lockdown I reflect that this country and its neighbours are well used to infectious disease. Malaria, HIV, TB and Ebola are well known here. Let me share a few statistics from 2018 that of course represents real people and real challenges. 37.9 million people were living with HIV and 770,000 died from HIV/AIDS. TB affected 10m worldwide with 1.5 million deaths of which 205,000 were children. Malaria, the often forgotten scourge in tropical climes, affected 229 million with 405,000 deaths and 67% of these were children.

COVID19 is affecting people accross ouir world….an infectious illness affecting people from all walks of life and all parts of the globe. This is a global humanitarian challenge with as ever those on the margins most affected. Money, position, power does not protect us and in many ways this demonstrated more than ever our shared humanity. It is also highlighting our common sense of helplessness. In low income settings the impact of COVID19 is deeply felt where there are no margins of resources. People who rely on a daily wage to provide food for families are struggling accross Africa. Transport blockades have affected migrant workers causing huge shifts of population in places like India. Struggling health systems in high income countries are well documented and the effect on poorly resourced health systems is only becoming clear for patients and families with many different health problems. Add to this refugee setting such as our partners in Northern Uganda working with South Sudanese refugees and in Gaza where they have already endured 11 years of siege and restrictions….can you imagine! We need to advocate for the ending of barriers, blocades and sanctions that are putting people are a greater risk than ever. 

Let me tell you about Ronald, one of our most dedicated and loyal volunteers in the palliative care team in PcERC in Kampala. He was diagnosed with cancer just a few weeks before he married his sweetheart Christine at the end of last year. We have been raising funds and supporting them as he completed surgery and chemotherapy but now how does he access his radiotherapy? There is no public transport, private car costs more than a day’s salary but today even that is not permitted, so he is borrowing a bicycle for the 45 minute trip each day… not an easy feat when you are unwell. Yet, he still says ‘Many thanks for all the support….MMPCU has been like a family to me’.

Dr Peace Bagasha is a palliative care and renal medicine consultant in our team, and she told me about her journey to work yesterday. ‘I was stopped 10 times by police road blocks trying to get to the renal dialysis unit. Most of the nurses are unable to attend to patients as they live on the edges of the city due to housing costs and low wages and are now struggling to get to work. We are hopeful that stickers to permit essential travel will be made available soon.’

Vicky Opia, lead palliative care nurse in Adjumnai Hospital where a COVID19 positive patient has been admitted tells me: ‘People are afraid. Can you imagine, a nurse riding a boda to work in her nurses uniform was beaten?’

Where is the hope and where is the humanity at a time such as this? I think is it right in front of us, within us and amongst us. All over the world we see how compassion and courage and kindness are lifting spirits and making unique contributions. We see a shared common experience and greater empathy for our global community and standing together. Creativity for scientists, technology experts, health care workers and families has never been higher. We are thinking about what really matters, what is the focus and source of our hope. Many are looking outwards to how we can help and encourage each other. Many are thinking about our enviromnmnet and realising our interconnectedness with the health of our planet. Many are growing spiritually and faith in God. Candles stand in windows and rainbows colour our lives.

In palliative care this language of open communication even about the tough times in life is very familiar. We hold that place of uncertainty with those facing life threatening and limiting illness. We seek to listen, show compassion, offer skilled holistic help, journey with people through the dark times and the bright times, reveal and redirect hope and support people to build resilience.

I have been moved by this meditation from William Brodrick...'We have to be candles, burning between hope and despair, faith and doubt, life and death, all the opposites. This is the disquieting place where people must always find us. And if our life means anything, if what we are goes beyoind the walls and does some good, it is that somehow, by being here, at peace, we help the world cope with what it vcannot understand'

We are working closely with our partners who areare busy developing guidelines, working out how to work through non face-to-face means, doing direct patient care and advocating for effective PPEs and showing what amazing contributions health care workers and social and pastoral support workers can achieve. CairdeasIPCT is seeking to offer more financial support and if you feel you can partner with us many thanks. You can donate here. We are seeking to address the anxiety and fear with our partner Prof Chitra Venkateswaran, a psychiatry specialist in India, leading ways to train and support families using virtual means.

Let this be a time of standing together, talking to each other, listening, sharing our common humanity, caring for our neighbour, the stranger, the vulnerable and marginalised, the broken and fearful in our communities local and global. Let this be a time for all walls and differenecs to crumble and be brought down. Let us move forward with renewed hope, deeper joy and fresh purpose.

Useful resources can also be found at www.thewhpca.org/covid-19

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.