Dr Liz Gwyther, CEO of HPCA, kicked off proceedings with an overview of palliative care needs in South Africa and the launch of the CaSIPO Project in the country. Beginning with an assessment of the burden of non-communicable diseases (NCDs), Dr Gwyther highlighted that the number of NCD cases are expected to increase by 17% in just ten years. In Africa, the rate of increase is closer to 27%. The need for palliative care services is already acutely felt across the continent but with these increasing health burdens, this will only intensify in the years to come.
“Palliative care is essential for comprehensive care and support. It is a passionate response to the needs at end of life,” Dr Gwyther told the audience, highlighting that widespread poverty and poor infrastructure in Africa contributes to the increased need for quality care. “Across the continent there is a need for improved prevention, promotion of health, treatment strategies and palliative care services,” she said.
Focusing on South Africa, Dr Gwyther went on to discuss what was on the horizon for HPCA. After working on a PEPFAR project to help hospices develop standards of palliative care and position themselves as centres of excellence, the hospice association were well placed to respond to calls from USAID to integrate care and support within health systems. After submitting a proposal, the full $50m grant available was awarded to the HPCA to carry out a project they had put forward called CaSIPO.
The CaSIPO project aims to integrate care and support with health systems to support better patient outcomes. As well as focusing on developing policy, the project will look to integrate palliative care into the public health system and ‘re-engineer primary healthcare’ to reduce mortality rates and strengthen district health systems. An ambitious plan that is expected to make ‘dramatic changes’ to health in South Africa, the project has funding for a full five years. “It’s a wonderful visionary programme and it’s exciting to be part of it,” Dr Gwyther said.
Following Dr Gwyther on stage was Dr Allison Russell, Technical Advisor for the Regional HIV/AIDS programme at USAID. Looking at children and palliative care from the perspective of HIV, Dr Russell discussed some of the psychosocial problems for vulnerable children and how guides produced by PEPFAR can help people who are working in these areas.
There are multiple stresses associated with HIV, which are recognised in the guidance documents provided by PEPFAR. Discrimination, death of parents, grief and bereavement and separation from siblings are just a few of the issues that can impact on children affected by HIV.
“Children can find themselves in unsupported and unhealthy family environments because families are most often incredibly burdened, sometimes with more than one child that they have to support,” said Dr Russell.
She emphasised that money that comes through PEPFAR projects, including those carrying out early HIV diagnosis in children and provide bereavement and psychosocial support through child and youth care services, feeds into the paediatric palliative care agenda. “The PEPFAR HIV treatment guidelines are also providing support for paediatric palliative care,” she said.
PEPFAR also has a ‘care guidance’ document that covers clinical, psychological, spiritual and social care. “It gives guidance for people who wish to provide services in this domain,” explained Dr Russell. “It can be delivered as home-based care, hospice care and it makes very good point on the linkages that palliative care needs to have with prevention, treatment, TB programmes and all vulnerable children.”
Finishing off her presentation, Dr Russell highlighted some of the challenges still facing those providing care and support for children vulnerable from HIV, including the confidence of care workers. “Children’s needs are complex. We need to improve capacity of our health workers to deal with palliative care needs. And we need to ensure paediatric palliative care is integrated into all streams of public health care re-engineering.”
The first plenary session of the conference was closed by a video message from HRH Princess Dina Mired of Jordan, who highlighted amongst other things the need to effect changes in drug regulations to allow for the wide distribution of medicinal opioids.
“Governments are primarily focused on drug control and addiction. But one issue should not cancel out the other.” she said. “Palliative care has slipped through the gaps. When you see a loved one grimacing with pain day and night, you understand palliative care is not a choice. It’s a human right.”