Elizabeth Nabirye, Florence Nalutaya and Mwazi Batuli are among 20 health workers that have benefited from the Development of Nurse Leadership for Palliative Care fellowship project developed through the partnerships between the University of Edinburgh, Makerere University and the Palliative Care Association of Uganda (PCAU) and managed by THET.
The World Health Organization (WHO) defines palliative care as mental and physical care and support for patients with life threatening illnesses and their families. Despite over 40 million people needing this treatment every year, 86% do not receive it despite such care being advised from the diagnosis stage until bereavement to ease pain and give patients dignity during their suffering. This is often due to insufficient knowledge and skills and the limited capacity of health workers to provide this care.
In low-resource settings, like Uganda where expenditure on health is substantially lower than the global average at $133 per capita, it is remote areas, where 75% of the population reside, that continue to feel the scarcity of health care initiatives. Uganda, however, has a much longer history of palliative care than many African countries. In 1993 it was introduced by Hospice Africa Uganda and since then has continued to see marked improvements in uptake and practice, becoming a study site for many other nations. Since 2004, Uganda has become a leader in the nurse-prescribing role of pain relieving morphine, which the Ministry of Health has now made freely available, greatly increasing the provision of pain management throughout the country.
The need for measures such as morphine have become increasingly apparent for Florence, Mwiza and Elizabeth following the training. In Uganda their nurse led approach to prescription of medication is something which the nurses feel particularly proud to be a part of, especially as in other countries this is normally carried out by doctors.
“When patients see me, they think I am the morphine keeper, so they say ‘you morphine woman, do you have any’, so I have to guarantee the drug’s availability.”
Julia Downing, the UK lead for the partnership, further explained that another of the main reasons for palliative care practice stalling within health centres is the approach that many doctors continue to take. Due to practiced understandings of doctor-patient communication, many doctors continue to place the burden of breaking the bad news on to nurses. This is particularly difficult when training in conveying such messages is largely lacking for nurses. Thus helping the nurses to build their confidence; “to help them stand up and be counted and not worry if they are standing with a doctor, a man, or whatever the challenge might be within the medical setting” was the principle objective of the training.
“Now with THET’s training, even when the doctors refer, we ask them why and challenge them into informing patients together”
Palliative care remains a neglected global health theme, but partnerships such as this show the value in training programmes. Although 20 nurses attended the course, a further 154 health workers have undergone training through the link nurse programme carried out in six hospitals and health centres throughout Uganda. Thus the sharing of knowledge and practice has not only happened across international borders but also between peers, regions and health centres.
For Mwazi, his confidence to speak to patients and health workers soared as a result of these training sessions; “I’ve interacted with other countries and they’ve appreciated the way I do what I do. The programme gave me exposure to other settings and allowed me to see what happens elsewhere.”
The lack of policy and professional recognition for palliative care as a medical field continues to challenge many of the nurses, but through partnerships such as this one and the links they have made with associations like the Uganda Nurses and Midwives Council, they remain confident that a national palliative care policy will come to fruition.
“I have seen that THET has effected change in the patients accessing quality care.”
For the nurses we spoke to the programme has provided a ‘life-changing experience’ not just for their professional development but also in terms of the care they can provide their patients.