I started my journey in palliative care as a volunteer at the Nairobi Hospice in 1993. I was, then, a postgraduate student in the department of Public Health at the University of Nairobi. At that time, I had no idea I would spend the next 28 years working in palliative care!
While volunteering at the hospice (mostly on weekends), I realized this is the place I wanted to be. I ended up working as the Senior Medical Officer for the hospice for many years. The experience I gained will remain with me forever; the patients that I met at the hospice will always have a special place in my heart. Most have since passed on, but their similes linger in my mind, so does their pain.
I left the hospice in 2007 to set up the Kenya Hospices and Palliative Care Association (KEHPCA), which is the national umbrella body for hospice and palliative care in Kenya. I recently retired from the position of Executive Director of KEHPCA after leading the association for 14 years. It has been a super exciting and challenging journey, shared with many others who had the same vision of scaling up palliative care services in our beautiful country, so that we could have more smiles and less pain.
Reflecting back on the 27 years, I have seen so many positive changes happen in my country. While we had only seven hospices and a few faith based hospitals providing palliative care in 2007, we now have over 80 institutions providing palliative care across the country. These include seventeen hospices, over forty-four public county hospitals with palliative care units, several mission and private hospitals, as well as a few Community Based Organizations.
They say a journey of a thousand miles starts with one-step; indeed, our steps have been increasing through the dedicated advocacy initiatives by KEHPCA and those in the field providing hospice and palliative care services to patients and their families. Not forgetting the goodwill of our government and other Civil Society organizations supporting palliative care.
I think some of the most remarkable changes that have happened over the years have been the embracement of palliative care by the government (Ministry of Health), both at the national and county levels; having a Department of Non-Communicable Diseases in the Ministry of Health, a division of a National Cancer Control Program and a National Cancer Institute. These have ensured that palliative care is been fully integrated in all the necessary policies and strategies on cancer and other Non-Communicable Diseases (NCDs).
There is no doubt that a country needs to have its policy makers engaged in, and supporting the integration of palliative care in its health care system. For this to happen, the policy makers should invest in setting systems that ensure that the necessary policies, strategies and guidelines are in place and that there is a realistic plan of implementation, monitoring and evaluation.
Additionally, we have seen great developments in the training of health care professionals and Community Health Volunteers in palliative care. Without a trained workforce, the implementation of services would not be possible. Further, Kenya has integrated palliative care in undergraduate medical and nursing training; thus ensuring that more patients have access to palliative care.
Although we occasionally have stock-outs of oral morphine, the situation has greatly improved over the years. The government procures morphine powder and oral morphine is included in the Essential Medicine List.
The role of both the Civil Society (CS) and Patient Led Organizations (PLO) cannot be ignored. CS and PLO play a major role in advocacy and making sure the government is accountable, walking the talk! Persons Living with Palliative Care Needs (PLWPCNs) and Persons Living with Non-Communicable Diseases (PLWNCDs) play a big role through their lived experiences.
There should be Nothing About Them without Them. They participate from the planning to the implementation stages of palliative care programs. Without doubt, development partners (donors) have played a key role in scaling up palliative care in Kenya. Not only their funds, but also their technical support has been very resourceful in realizing our dream.
I truly believe that where there is a will, there is a way, and that we should hold fast on to our dreams. If we work together, we can make palliative care a success within our settings.
It is not a one man show, it is everyone’s business.
Zipporah Ali, MD. MPH. MPC. HonDUniv
Chair-Non-Communicable Diseases Alliance of Kenya (NCDAK)
Palliative Care & Public Health Specialist