At a specialist training session for media on palliative care and Universal Health Coverage (UHC), the Disability Mainstreaming Coordinator at Hospice Palliative Care Association of South Africa (HPCA), Petra Burger, who is also a person living with a life limiting condition, called on the government to accelerate efforts to provide quality care for all South Africans living with serious or life limiting conditions.
The training session was part of HPCA’s new ‘Patient Power’ project, a country-wide initiative that aims to enable and amplify the voices of those directly affected to demand quality care for themselves and others who need it as part of UHC.
The World Health Organisation (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
The average need for palliative care for the South African population is 698.5 persons per 100,000; close to one out of every 143 people every year.
Palliative care is an important part of UHC as defined by the WHO, and, in 2014, the World Health Assembly passed a resolution calling on all governments to integrate palliative care into their healthcare systems. South Africa’s National Health Insurance (NHI) Bill is our response to the call for UHC and includes palliative care as an essential element of healthcare.
In 2016, Minister of Health, Dr Aaron Motsoaledi, appointed a Steering Committee for Palliative Care to guide the Department of Health (DoH) to implement the recommendations of the World Health Assembly resolution 67.19. These recommendations include development of a national palliative care policy, ensuring domestic funding and human resources for palliative care, support of families and caregivers, training of all healthcare workers in palliative care, ensuring availability of essential palliative care medicines, fostering partnership between government and civil society, and monitoring palliative care actions. A key achievement of the Steering Committee has been the approval of the national Policy Framework and Strategy for Palliative Care in April 2017 by the National Health Council.
I’m a member of the Steering Committee and serve on the committee’s Vulnerable Populations task team bringing the voice of those directly affected to bear on policies affecting their healthcare.
As a person who has experienced serious illness, I am the expert on my own health, care and abilities. I am an avid believer in the participation of people with direct experience of serious illness to create social change. We speak from the heart, with passion and commitment, as we are ‘living the life’.
We are encouraged that the government is willing to listen to me and to people with palliative care needs to help integrate palliative care as part of UHC into our country’s health system. We have the highest needs in the healthcare system. Don’t leave us behind!
As CEO of HPCA, Dr Liz Gwyther, pointed out, South African hospices do a wonderful job of providing quality, compassionate care, free at the point of service to those they can reach. However, the need for palliative care in South Africa is too great for hospices to address on their own. Dr Gwyther added that the National Policy Framework and Strategy for Palliative Care aims to ensure integration of palliative care into public health facilities, which will improve access to palliative care for all South Africans.
Research has shown that palliative care alongside treatment improves patients’ quality of life, reduces depression and marginally prolongs life. It is vital that people directly affected by serious and life limiting conditions are empowered to speak up and demand the best care possible for themselves and their loved ones.