With 53 years of experience volunteering in palliative care between them, these five social workers have seen it all.

As social worker volunteers with the Palliative care Education and Research Consortium (PcERC) in Kampala, Uganda, they provide the psychosocial support and assist the practical needs of patients receiving palliative care and their families in hospital. 

Indeed, social workers Maria, Ronald, Teddy, and the affectionately named “Vicky 1 and Vicky 2” are a large part of the PcERC team and they each spend at least two days every week on the wards of Mulago Specialised Referral Hospital and Kiruddu National Referral Hospital.

Recently, I had the privilege of spending time with each of them, as we discuss their role in the unit, the patients and families on the ward, and the impact of palliative care. 

I’ve quickly come to find out what all the social work volunteers can do in the PcERC team. They visit the patients between ward rounds and alert the clinical staff if there is any issue.

They listen, guide, and counsel the patient and family on topics from navigating around the hospital to reconciling with loved ones. While they are well acquainted with grief and bereavement, these never get easy and it can be an emotional challenge to continue their work sometimes. 

Through their time with PcERC, they have been trained to help write wills and draft formal requests – and at the same time – have grown as educators as they bring homework and other assignments to children on ward missing class.

Holistic care really can be quite practical, as I learned from the social work team, and so their work can include picking up prescriptions or a meal for the patient. They also work with the PcERC administration to allocate their patient comfort fund towards purchasing items the patient and family cannot afford themselves. 

During my time together, I kept asking, ‘Why palliative care? What keeps you volunteering with PcERC?’

For several of them, the palliative care team has become a family: one social worker’s spouse became quite unwell and needed counselling at one of the national government hospitals. Ever since that experience, that volunteer warmly remembers how the palliative care unit stood close to their family and supported them during and after the spouse’s hospitalisation. 

Another volunteer shared on about a previous cancer diagnosis and their journey towards wellness; now, they want to offer the same compassionate and quality care to others who have cancer and other chronic diseases. 

It is not a surprise, then, that the combined efforts of the social work volunteers with the clinical staff have a great impact on the patients and families.

One oxygen-dependant patient who was already hospitalised for two years, shared that she feels more “at home” at the hospital and less depressed after being referred to the palliative care unit. She even said that she has no worries at all: “I have got a special team to help me and to check on me on a daily basis … it’s to the extent of that I even forget that I am an orphan.”

Maria, Ronald, Teddy, Vicky 1, and Vicky 2 are also eager to share the impact that palliative care has had on them. Ronald, for example, cites the many trainings they have attended as well as the opportunity to learn and practice research skills. Likewise, several have observed that they’ve bettered as social workers and in their communication methods after joining PcERC. 

Maria summarised one of her favorite aspects of volunteering with the palliative care unit: teamwork.

“I like the teamwork in palliative care,” Maria told me, “Which consists of doctors, nurses, social workers, and pharmacists. This teamwork is good because it encourages everyone in the team to contribute and work shared among all in the team. Palliative care is not a one man’s show. Two or more heads are better than one.”

We have certainly seen the benefit of the whole palliative care team in our partner, PcERC. Well done to each member of the unit, including the social workers who volunteer there. 

More than 1000 people from 107 countries and all sharing one goal…’Serving with love in a hurting world.’

Every 4 years health care workers gather for a global conference for the International Christian Medical and Dental Association (ICMDA). This 17th conference was the biggest ever, the second time in Africa and the 60th Anniversary of ICMDA. Arusha gave a warm Tanzanian welcome to the many delegates from all corners of the globe.

Delegates could attend the student’s stream, the pre-conference stream as well as the main conference where a number of plenary talks, bible readings and myriad breakout sessions were on offer. Topics covered included climate change, demon possession and mental illness, decolonising health, sexuality, leadership, education and many more.

These reflected the breadth of interest and work with a focus on those marginalised or left behind in many societies and the need to rethink heath care in the modern age.

I was asked to lead one breakout session entitled; Palliative care; compassion in action.’ With a packed room and even folk sitting on the floor colleagues from across different settings through about the nature of hope, how that is relevant to understand and counter moves to medically assisted dying and how to integrate palliative care using a transformational model. We could have explored much more but it’s good to see palliative care on the programme and discussions are ongoing to increase access to training.

One talk stood out for me…Vinod Shah is a giant of health care. He has championed access to care for rural areas and strengthened primary care provision in India and beyond and I had the privilege of working with him in the distance learning department at CMC Vellore some years ago. He championed ‘refer less and manage more’ education for rural and mission hospital settings.
His talk ‘Justice in Healthcare Distribution’ examined health as a right, global inequalities and causes plus theoretical and practical ways to change this dangerous status quo. The most unequal societies; whether low income settings such as in many sub-Saharan African countries or high income setting like the USA have some of the poorest health outcomes.

Vinod Shah skilfully described how most of the current monetary systems simply drive poorer nations further into debt and require hard currency to serve that debt…a vicious cycle that further entraps. Using a redistributive model all can benefit. Those on low incomes, who previously were driven into further poverty by chronic illness, can have the protection they need for health and education. In turn they can start to generated wealth for their families and communities and in turn benefit the whole economy including the rich.  He challenged us all…advocate for increased funding for health with a focus on primary care with a more flexible workforce. Work to achieve community- based insurance schemes and cooperative systems such as pharmacies. Then harness new technologies to rethink digital healthcare and home based care.

I also loved the joy and exuberance from our East African colleagues as they taught the rest of the world how to dance and sign during worship sessions. There were opportunities to showcase national cultures through dress, dance, food and song as well as pre and post conference travel opportunities in beautiful Tanzania. I think the Burundian’s captured many hearts with their dancing. I was able to meet new friends, including from Uganda, as well as reconnect with others. I appreciated the opportunity for in depth conversations and exploring vulnerability together.

A highlight was my visit to the ELTC headquarters in Arusha and meeting several previous mentees who completed BSc in palliative care at Hospice Africa Uganda / Makerere University. They are now leading programmes and inspiring others. I had forgotten to promise to gift me a Masi costume if I ever visited…but was overwhelmed at the generosity. Thank you for the wonderful welcome Simon Megiroo, Tusiime and Batholomew Bakhari.

The theme of the conference was inspired by verses in the gospel of Matthew 22:37-40. Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ This is the first and greatest commandment. And the second is like it: ‘Love your neighbour as yourself.’ All the Law and the Prophets hang on these two commandments.”

At a time when nationhood is rising and divisions growing may we realise our common humanity. May we go from this conference refreshed, challenged, inspired and renewed in our vision to ‘serve with love in a hurting world’ 

Imagine trying to live with severe unrelieved pain caused by an illness such as cancer. The pain is overwhelming…. affecting your mood, your sleep, your ability to do the simplest task, and your relationships. The only painkiller you can find or afford is paracetamol which can’t relieve the severe pain. You feel an increasing sense of despair…how can you live with this suffering?

This is the reality for many millions of people across the world and an issue that Cairdeas and our partners see and seeks to address daily. 

In the middle of June, the World Health Organization (WHO) issued a new report that speaks to this reality. “Left behind in pain: extent and causes of global variations in access to morphine for medical use and actions to improve safe access.” 

Dr Yukiko Nakatani, the Assistant Director-General of Medicine and Health Products in WHO introduces the growing crisis as “the persistent lack of access to morphine for medical use, particularly in low- and middle-income countries.” Nakatani continues, “This report underscores the fact that morphine is an essential medicine and a gold standard for pain relief that has been included in the WHO Model List of Essential Medicines since 1977” (p. 7).

The barriers of accessible and safe morphine use are many. “Despite its importance, consistent and safe access to morphine is hampered by a range of factors, including a lack of coordination along the supply chain, inadequate physical, financial and skilled human resources, weak governance, and misconceptions about pain and opioids” (p. 7).

The report shows continued unequal and inadequate access to morphine: “more than 95% of all the opioids (in morphine equivalent doses) were distributed to high-income countries, with only 0.03% being distributed to low-income countries” (p. 14).

Due to inconsistency in the availability of morphine, half of surveyed lower-income countries reported that at least 80% of their patients could not receive morphine when needed (p. 22). These disparities play a toll, with estimates that half of the deaths worldwide include serious health-related suffering (p. 14).

We encourage you to download and read the WHO report here for the full details. Meanwhile we will highlight three areas of action recommended to improve morphine access below in light of our international work and partnerships in palliative care.

Recommendation #1: Policy work and government structures.

Advocacy work such as raising awareness about unmanaged pain and suffering as well as demystifying morphine and addressing fears among governmental leaders and health care leaders is foundational to morphine access. Such policy work can begin in regional areas, especially after a country has agreed to include palliative care but may not be able to implement it. 

We have seen this before in different regions of Uganda, where we have been privileged to meet and share our needs assessment observations with the District Health Official (DHO) of Obongi district. Our reports to him regarding palliative care needs of refugees and hosts in their areas has gained the district’s attention and prompted their support of the work of our partners. 

Or, in the hospital setting, advocacy involves the outlining the need for trained professionals and allocation of staff to either create or partner with a palliative care unit. Staffing support and training opportunities have come through two of the national hospitals in Kampala, Uganda. 

Recommendation #2: Training of healthcare workers in morphine use.

Hand-in-hand with advocacy is the building of capacity for healthcare workers to safely prescribe, administer, and store morphine. This second recommendation may capture our most active part the Cairdeas IPCT international partnerships. 

From the recent two-week training in Mauritania through colleagues in Sudan, to our professional diploma programme in the Gaza Strip in palliative care and pain management, to the revolving cadres of medical students and healthcare trainings in Uganda, palliative care education is foundational in all of our international work. Knowledge is key whether is transferred through training postgraduate doctors, providing clinical observation to palliative care nurses, or simply coming alongside the patient and caregivers in understanding pain management.

The WHO report agrees: “It is important to note that any efforts to improve the availability of morphine products must be accompanied by a health workforce that is well-trained in the use of opioids for medical purposes through professional education. Without it, increased product availability cannot translate into safe and effective pain relief for patients, and can cause wastage.” (p. 7)

Recommendation #3: Establishing systems and local production for morphine.

We are highlighting a third, from the many, recommendations of establishing reliable systems for morphine access and to include local production of morphine. Establishing hub-and-spoke distribution networks was prioritised for the WHO region in Africa through their recent survey, with other regions such as in the Western Pacific, adding affordable pricing and expanding access to different facilities. 

While Cairdeas IPCT and our partners are not directly establishing systems or areas for morphine manufacture and distribution, it is through our collaborative advocacy, research, and education and training that will build systems. And these systems through palliative care can be transformational. 

As Dr Mhoira Leng has shared in the recent conference for ICMDA in Arusha, Tanzania, palliative care is values-based care: “promoting dignity, relieving suffering, demonstrating compassion, fighting for justice.” From transforming the individual lives, to the medical practise, to the institutional systems and society as a whole, with the knowledge and application of palliative care comes transformative power.

See below for a list of recommended actions from the surveys collected by WHO for their June 2023 report.

Cite: 
Left behind in pain: extent and causes of global variations in access to morphine for medical use and actions to improve safe access. Geneva: World Health Organization; 2023. Licence: CC BY-NC-SA 3.0 IGO.