Dianah Basirika and Roselight Katusabe are key figures in the development of palliative care in Uganda, a country where, out of a population of more than 47 million people, as few as 11 per cent will be able to access care and support as they face a terminal illness.
The concept of palliative care is not unknown in Uganda – it was actually first introduced 30 years ago when charity Hospice Africa, founded by Dr Anne Merriman, was established 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.
The World Health Organisation and the World Palliative Care Alliance have now recognised Uganda as among the countries having the highest palliative care level in the world.
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.
But as both Dianah and Roselight agree, there is still very much more work that needs to be done to make palliative care central to their nation’s health care provision.
Roselight is a palliative care nurse and lecturer in palliative nursing while Dianah is a palliative care nurse, trainer and lecturer who also works on the development of palliative care in other African countries.
They have been in Britain as part of a pioneering link between St Luke’s and Hospice Africa that earlier this year gave our Nurse Emma Matthews the opportunity to further her experience by spending two months with the palliative care team in Uganda.
In return, Roselight and Dianah have had the opportunity to observe the St Luke’s team at work, not only within the hospice itself but also in the wider community, highlighting both the similarities and differences between levels of service in the two countries.
They were also guest speakers, along with Emma, at the Hospice UK National Conference in Liverpool.
“Although loads of advances in training and clinical care have been made, palliative care is still very much a speciality for us and generally about only 11 per cent of Uganda can access palliative care,” Roselight explains.
“The health care system generally is very limited because of the low economic standards of the nation as well as things like cultural and religious beliefs that really impair access.
“There is also the belief that palliative care is only for the dying so people come to us only when they are facing death and not sooner.”
Cancer is one of the primary reasons that people might seek palliative care but the Ugandan team also support patients facing a wide range of conditions, including HIV and Aids and Sickle Cell conditions.
There are something like 13 hospice operations and palliative care units currently in operation throughout the country, though the services offered do differ from the English model.
And while the English hospice movement does receive some funding from the National Health Service, the Ugandan system depends entirely on charitable donation.
It also has a reliance on volunteers, who work closely with health care workers to ensure the message of hospice services – and how those services can offer positive and practical solutions to the issues of terminal illness - reaches as many people as possible.
“Our model for palliative care in Uganda is absolutely community care, which means a mix of home-based care mainly, outreach and roadside clinics,” Dianah says.
“Not all patients can come to the facility to see you so we really do have to take the care to them and that really can mean setting up at the roadside and being guided by the needs of the patients but at least that gives you a picture of what is happening within the patients’ physical, psychological and social life.
“The challenge we would face with in patient services would be that they are very expensive and that would make them difficult to maintain.
“We do request our patients to make a donation if they can but for many that is not possible.”
Another challenge facing the team is that even within the country as a whole, there are different cultures and belief systems that all demand their own responses.
“Every culture you go to, you have to promote palliative care in a way that they will embrace it,” says Roselight.
“If you don’t follow people’s rules and beliefs and respect them, then it is hard to give a service.”
One area that both Dianah and Roselight have been most impressed by is the way that our team works in close conjunction with the NHS, co-ordinating links with services like District Nurses.
“This is something we really don’t have in Uganda but I love the co-operation that St Luke’s has with the District Nurses and the National Health Service and the way that things come together,” Dianah admits.
“You realise when you look at our health care system, even access to hospitals is limited and not everybody can get to a hospital so the majority of people remain in the community and that is why, as a palliative care service, we need to strength our community services even more.”
Roselight adds: “We have had 30 years of palliative care but now we need to improve the service.”
Do either Roselight or Dianah ever envisage a time, though, when Uganda could open a facility with services like those offered by St Luke’s?
“This is a hotel, not a hospice,” Dianah laughs. “If our patients came here, they would never want to leave!”