St Luke’s Staff Nurse Emma Matthews admits that the one thing she brings home after spending two months providing end of life support for a pioneering hospice team in the African country of Uganda is that you should never take good medical care for granted.
Emma volunteered to spend two months with international charity Hospice Africa, the organisation launched in 1992 with the vision of offering palliative care for all those in need in African countries, with Uganda identified as the best host for a centre of excellence.
As part of Nursing Voices, a pandemic project she had been working on with NHS England, Emma had heard the story of a nurse who had worked in the West African country Sierra Leone at the height of an Ebola outbreak.
Doing further research, Emma then came across Hospice Africa and decided that she too wanted to volunteer.
In Uganda, palliative care is taken out into the community, where it is needed most - much like the support given by the our Community team throughout Sheffield.
The mission is to provide a holistic and culturally sensitive palliative care service, opening the door to pain control through accurate treatment of pain and the introduction of affordable oral morphine, taken in the home on a regular basis by the patients themselves, closely monitored and recorded by the Hospice Africa team.
As a result, although only about 10 per cent of patients in need are accessing palliative care in Uganda, the World Health Organisation and the World Palliative Care Alliance have recognised the country as among the countries having the highest palliative care level in the world.
And although she was based in the Ugandan capital Kampala, much of Emma’s volunteering took her out into rural communities where attitudes to illness are very different to anything she has encountered working in the British health sector.
“It isn’t really part of their culture to die within a hospice setting, so there is no in-patient element to the service the hospice provides as people prefer to die at home,” Emma explains.
“Hospice Africa, when it first started, noted that life expectancy was maybe 20 years lower than in the West and although that figure may be higher now, life expectancy remains a lot lower than here and death and dying is a much more common part of people’s lives.
“We saw a lot of people with HIV and Aids and the neuropathic conditions that are the result of that.
“There were many cancer patients too and one of the things that surprised me most was the stigma that goes with that.
“Although in many ways they look after each other in ways we do not and have a very strong sense of community, people with cancer can be rejected by society because it is seen as a curse.
“There are people too who have been rejected and punished because their family cannot afford to look after them or who are ashamed by something like the smell of critical illness.
“You have to remember, though, that this is a country where people live in absolute poverty, where they are making a living any way they can.
“But at the same time they are a polite and gentle people who always made me feel welcome wherever I was.”
Although the Kampala team does have two doctors working primarily in managerial positions, the system is mainly nursing led, with Emma accompanying the nurses on their daily rounds which would take into both urban areas – many of them very disadvantaged - and rural communities beyond the city.
“I had never met nurses like them before and the only thing I can say is that they were brilliant,” Emma says.
“I am passionate about nursing and am an advocate for nurses everywhere but the dedication I saw there was incredible.”
Emma became so immersed in the experience that she is already planning a return visit, aiming to be back in Kampala next January so she can fill more volunteering sessions with the nursing team.
“What I have brought back from this first visit is a lot of love and I can’t wait to be back there,” she says.
“The patients might feel shame at having an incurable disease but Hospice Africa and the nurses tell those patients that they are loved.
“Being there and seeing that sort of approach made me feel so grateful for the things we take for granted, things like free education and free health care.
“There are many things about their way of life that are great in terms of creating communities and support but at the same time people are dying unnecessarily for want of the things that we accept as normal.
“But being part of Hospice Africa for just eight weeks was like everything I love and am passionate about coming together in one experience so of course I want to go back – it just isn’t the sort of place you go to and say well that was nice but I’m done now.”