Holistic Care for children continues in Uganda despite Covid

Categories: Care.

During a Ted Talk in 2014 Bill Gates stated the world was not ready for the next epidemic, ‘If anything kills over 10,000 people in the next few decades it’s most likely to be a highly infectious virus rather than a war, not missiles but microbes’.[1]

He later recommended that a billion dollar a year Pandemic Task Force should to be formed by the World Health Organisation (WHO). That same year, on the 24 May 2014, Member States of the WHO met for the Sixty-seventh World Health Assembly and passed Resolution 67.19 urging national governments to develop, strengthen and implement palliative care policies within the continuum of care.

Unfortunately, we now know, the world was neither prepared for a pandemic, nor had it strengthened or implemented palliative care. We argue that implementing palliative care and adopting a home and community-based approach could have made a difference to millions of people around the world during the pandemic.[2] As Davies states

‘Palliative care is an important component of the medical response to pandemics and other health emergencies. The principles of palliative care do not change, but the practice of palliative care has to change as a result of factors such as greater demand and infection control measures’.[3]

At a global level Covid struck heavy and struck fast. With limited time for planning, countries, governments and institutions were forced to respond to an unknown and virulent attack. The resulting confusion and uncertainty meant that children and adults, already living with a serious illness, were directly and indirectly affected by the pressure placed on health care resources. It was apparent that for all health systems the effect of a fast-moving disease was crippling but in under-resourced regions the impact was even harder felt.

Africa’s persistent challenges with poverty, inequality and inadequate public health care systems, exposed already vulnerable communities to greater risk of infection. Due to these distinct circumstances,[4] any pandemic response would need to take into consideration the environment and lived experiences of people. More recently, gaps identified in pandemic plans have ‘spurred a number of innovations and adaptations to the coronavirus response in Africa—initiatives that continue to unfold’.[5]

Covid’s rapid spread resulted in a world-wide, knee-jerk reaction indicating limited foresight in effectively containing and controlling the pandemic’s spread. This failure to respond, and contain the spread, introduced an influx of highly contagious individuals into hospitals which created a heightened spread within these institutions and impacted on the ongoing care of pre-existing, seriously-ill patients.

The story of Catherine Nakasita illustrates a well-recognised people-centred approach in Palliative Care (PC) which adopts a home-based and community care model, and is tailored to local needs. Such an approach may be better served to monitor and contain the spread of infection amongst infected and unaffected individuals.

Prior to the pandemic, Kitagata Hospital in the Sheema district of Uganda, set up a palliative care unit where Nurse Catherine was the lead nurse.

As a palliative care trained nurse, Nurse Catherine worked both at Kitagata Hospital, carried out home visits and was also responsible for supporting community health workers who cared for patients in their home. These workers would alert Nurse Catherine about the changing needs of patients in their communities.

Nurse Catherine and her community health workers built a vital link between communities and the formal health system, particularly important during a pandemic, when health systems face huge disruptions and stress.


Benji’s story: Africa – Access to palliative care during lockdown

In Uganda, as with the rest of the world, when the pandemic struck the total lock down crisis in April 2020 saw admissions to the palliative care unit drop by 50%. While staff struggled to carry out in-patient consultations or provide access to medicines, patients, in turn, postponed appointments and home visits dropped off.

During the upheaval Nurse Catherine learnt about a four-year old boy who had arrived at Kitagata Hospital in severe pain. The boy, Benji, had a temperature of 40 degrees and a cancerous, foul-smelling ear, leaking pus which was attracting flies.  His distressed mother struggled without support from Benji’s father, who had evicted both from the family home. In desperation, without financial means and hungry, Benji’s mother was forced to carry Benji 13 Km on her back to Kitagata Hospital.

Nurse Catherine treated Benji for three days with antibiotics and painkillers including morphine, she then transported Benji to Mbarara Regional Referral Hospital for chemotherapy. She also provided his mother with emotional and psychological support.

At both Mbarara and Kitagata Hospitals medical practitioners[6] said that Benji’s situation reflected the hidden reality of many seriously ill children in communities where access to necessary care and treatment (chemotherapy) was limited or restricted by the introduction of severe lockdowns. The transport situation was further exacerbated as special authorisation was needed for any travel and finding the Resident District Commissioner to get authorisation was beyond the financial means of most families, and most public health institutions lacked resources to assist.

In environments seriously challenged by issues of poverty and limited resources, addressing the impact of a virulent pandemic depends on the surrounding circumstances and available resources. Nurse Catherine adopted an approach which reflected her accumulated knowledge of her patients, her experience of the general terrain and utilised her existing, established network of support. She customised her approach to adapt to the existing realities within the pandemic situation.

By calling on her established PC network and training she raised funds, for transport, from Palliative Care Association of Uganda (PCAU) which assisted in patients accessing specialist treatment. In addition, the patient’s pathway to treatment and care was further facilitated through negotiating the waiver of hospital fees. In implementing a patient-centred approach to the diagnosis and care of potential cancer patients and, together with PCAU and the medical superintendent at Kitagata Hospital, Nurse Catherine was able to ease access to care for many patients.

PC during Covid: Important lessons learned

Nurse Catherine is a trained palliative care nurse who works closely with her surrounding community and home based carers, she is also a Nurse Prescriber. As a nurse prescriber she is allowed to prescribe, dispense and administer opioid analgesics in homes and in hospitals. This is due to the fact that, in Uganda, the progressive legal framework recognises the right of registered PC nurses to prescribe and administer scheduled medicines.[7]

One important feature of nurse Catherine’s practice, and of other nurse prescribers in Uganda, is the necessity for keeping updated and accurate data on large numbers of patients (over 400). In South West Uganda Catherine and others were responsible for gathering, sharing and updating data on their patients, their condition, treatment and health needs, long before the pandemic struck. This is because routine patient data must be collected to validate the continued prescribing, administration and distribution of scheduled medicines (e.g morphine and other opioids).

Nonetheless, despite the fact that Catherine has done a remarkable job in alleviating the suffering of many seriously ill children, like Benji, Catherine’s approach is not sustainable on its own, it must be adopted widely and institutionalized to ensure that more children and regions are included.

To be sustainable, the health care system must be transformed, adopting an approach where policies and action plans, including financing, account for the diversity of individual and community health needs within countries. This calls for a horizontal approach where collaboration and buy-in includes multiple players from government and civil society, to the private sector and an empowered community. [8]

Can this approach be sustainable?

Palliative care is everyone’s responsibility. If it is planned from within health policy transformation and there is political buy-in then this sustainable approach is possible.

To embed palliative care within the health system, in a sustainable way, it should be implemented gradually, incrementally, and should take into consideration the capacity of countries to implement it.

It requires the support of the international community, with donors and international agencies being mindful to call for routine data collection over time to measure improvement. Unfortunately palliative care is not prioritised in pandemic planning[9] – in spite of the day to day need of patients, the family and of healthcare workers and society. Without policies that mandate and then implement palliative care services, even in times of need, it is unlikely that palliative care will become widely accessible or sustainable.[10]

The authors would like to acknowledge Catherine Nakasita for her input and feedback during the writing of this article. Without her help this article would not have been possible.
For questions on this story please contact the co-authors:

Dr Desia Colgan desia.colgan@wits.ac.za
Nicola GunnClark gunnclarknicky@gmail.com
Emmanuel Kamonyo Sibomana : healthrightseafrica@gmail.com


[1] Evening Standard UK 4 November 2020 https://www.standard.co.uk/news/uk/bill-gates-microsoft-smallpox-terror-attacks-policy-exchange-jeremy-hunt-b964271.html

[2] An innovative feature of palliative care is that, with adequate support from trained palliative care doctors, nurses and community health workers, much of its service is provided in the patient’s own home.

[3]  Palliative care in the context of a pandemic: similar but different. April 2020 NIH National Library of Medicine PubMed    https://pubmed.ncbi.nlm.nih.gov/32354734/

[4] Fenollar, F., & Mediannikov, O. (2018). Emerging infectious diseases in Africa in the 21st century. New microbes and new infections26, S10–S18. https://doi.org/10.1016/j.nmni.2018.09.004

[5] African Adaptations to the COVID-19 Response by the Africa Center for Strategic Studies April 15, 2020: https://africacenter.org/spotlight/african-adaptations-to-the-covid-19-response/

[6] Nurse Catherine’s concerns were shared by staff at both hospitals including the Mbarara paediatric oncologist and the Kitagata hospital superintendent.

[7] Jack Jagwe, FRCP, FRCP(Edin)Uganda: Delivering Analgesia in Rural Africa: Opioid Availability and Nurse Prescribing – Journal of Pain and Symptom Management (jpsmjournal.com), accessed March 2 2022

[8] This includes consideration of human resources, training and education, availability of medicines and collaboration with international stakeholders, like UNICEF.

[9] Emmanuel Luyirika et al, Progress Update: Palliative Care Development Between 2017 and 2020 in Five African Countries | Elsevier Enhanced Reader, Journal of Pain and Symptom Management, accessed March 3 2022

[10] Integrating palliative care and symptom relief into primary health care: a WHO guide for planners,  https://apps.who.int/iris/bitstream/handle/10665/274559/9789241514477-eng.pdf, accessed March 3 2022


Photo caption: Kitagata Hospital, Sheema district courtesy of Palliative Care Care Association of Uganda.

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