I would like to share with you Patients’ Stories during COVID-19 and thank to Jim Bennett for this sharing.
The clinical department of Hospice Africa Uganda (HAU) has been providing affordable palliative care to patients with life-limiting diseases within the catchment areas of its three clinics in the Districts surrounding Kampala, Mbarara (SW) and Hoima(NW). It works with the Uganda Cancer Institute and teams of community volunteers to identify patients and mostly provides mobile home care.
The government’s COVID 19 lockdown has severely limited peoples’ ability to move about, work, and buy food. HAU’s service has been severely restricted as they have been licensed to move with only one vehicle at each site. They are caring for around 1,500 patients and families.
Nurse Roselight is an experienced member of that team and her report of her visits to 3 patients during the last week illustrates the holistic nature of care and the practical application of the Hospice Africa ethos of putting the patients’ needs first.
Patients’ Stories during COVID-19
COVID -19 has greatly affected our work as palliative care service providers given the fact that our patient’s psychosocial issues are increasing. Most live very far from HAU so it has been so hard to access.
N.E is a 42 years old patient with Ca breast. She was done mastectomy and had come back for radiotherapy treatment. Since the lockdown started, she has been at the hospital veranda waiting to be scheduled, all her previous dates have been repeatedly postponed. She cannot go back home in Masaka due to lack of transport and she is very poor that no family member affords to send her money to buy food.
We drove to the hospital after her call through a well-wisher, we found her sleeping on the ward veranda and she was weak to move due to hunger. She takes her pain medication on an empty stomach and she looked so dizzy. On talking to her, we found out that she had spent two days without food because even fellow patients who used to share with her have run out of money.
She had a prescription of medication that she was given and all medication was out of stock from the hospital pharmacy. As for HAU, we supplied the medication and gave her 20,000UGX for something to eat .This is what we could afford.
The situation patients are living is so painful that I felt tears rolling out of my eyes. I had nothing to do for all that was coming to me but only words of encouragement which I felt was not enough because they all needed food!
GOD HAVE MERCY AND TAKE AWAY THIS MONSTER COVID-19, LOCKDOWN LIFTED SUCH THAT PEOPLE CAN ATLEAST GO AND DIE PEACEFULLY IN THEIR HOMES AND WITH THEIR FAMILY MEMBERS CLOSE TO THEM!
This is N.V 39 years old patient with metastatic cancer of the ear. Lives in Kyebando rents a one-roomed house. She was supported by her relative but due to the lockdown, the brother no longer makes any income and this patient was starving in the house. She struggles to eat posho because her mouth was affected by the disease that spread to the oral cavity. We were called by the neighbor expressing her suffering. We went for a home visit, took medication and some money to help her get some affordable soft food. She was so excited mentioned that “May the God that you serve keep you safe and add more from where you got to think about people like us. This is the least I expected today because I have contacted all my relatives, no one was able to send me even a bar of soap. It’s my landlord who shares what she can with me!”
K.A is a 12 years old boy, with Acute myeloid leukemia. He lives with the mother and his brother, their father abandoned them and the mother is the main breadwinner and physical carer. Since the lockdown the mother has not got any financial support from the relatives. During the follow-up calls, the mother picked the phone calls while crying and when I asked why she was in a very low mood and I got worried about the boy’s health. She however told me that “Nurse Roselight, I have nothing to feed my sick child, hunger might end his life before cancer does!” She broke and cried uncontrollably. We had received some maize flour from a Hospice Friend and one of the team members added 2kilograms of sugar then we drove to the home. The excitement was overwhelming, the boy moved out of the house and knelt down with a smile without a word!, All fellow tenants around their neighborhood moved out of their rooms to see and thank the people who had gone to save the starving family. It was so touching.
All my best regards.
Universal Health Coverage and Health Systems
World Health Organization
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