Welcome to 2019. We thought we would take the opportunity and speak with Dr Guma on some of KHC’s plans and activities for 2019.
Firstly, it cannot be underestimated the leadership of Dr Guma and the dedication of his fellow founders, has been a case study on how community run organisations that are embedded in the communities they care for, can achieve what may seem the impossible particularly with limited resources. Since KHC grew from its humble beginnings in 2007, the milestones the organisation has reached to bring quality comprehensive care to so many vulnerable people in the local communities is truly to be admired.
Q Dr Guma welcome to 2019. Can you give our readers some insights into the key activities planned for this year?
Thank you. I think we have an exciting year ahead. But I guess I say that every year as each year brings something new and exciting to the organisation and also challenges.
I would first of all like to thank the KHC team for the wonderful work that they did in 2018, it was a great year with lots of achievements. We had a great end of year party.
I would like to take this opportunity to congratulate Mr. Alex Bugingo (Left) a clinician for winning the KHC award of Employee of the Year 2018.
At the end of last year we started developing for KHC an organisation Standard Operational Procedure manual. With the help of one of our volunteers Carol, the department’s workshopped the key processes in their departments. In all 35 processes were mapped and this provided us with an opportunity to see if there were any gaps, or better ways to do things. It provides new staff with a valuable tool to understand the workings of each department. This manual will be finalised soon.
We also were recently awarded a grant by the Open Society Institute of East Africa (OSIEA) to share our experiences of providing palliative care to children and their families with life limiting illness especially HIV/AIDS and Cancer.
We will carry out a number of activities over the next 18 months to advocate for increased availability of childhood palliative care. During the past two and a half years of running the New Hope Children’s hostel, we have seen the wonders of quality palliative care to improve the quality of life of children with cancer.
Q. I understand you will develop the next 5 year Strategic Plan?
Yes, we have hired consultant’s Healthwise Uganda Ltd to assist us with this project. I think that having someone ‘outside’ the organisation to facilitate and manage the project will provide us with different insights. This plan will guide our operations and programs during the next five years. We plan to have this project completed by the end of March 2019.
We are also planning to strengthen our quality assurance through identifying areas where we are not performing well and implementing continuous quality improvement (CQI) projects to ensure that the medical care we are providing is in line with the national guidelines.
Q I read that you have received support for your laboratory, can you tell us about this?
Yes, earlier this year we received a great donation from a charity organisation called Uganda Lodge. They are a group of businessmen in Uganda, Kenya and all over the world who contribute to charities. They procured two high tech laboratory machines i.e. a complete blood count machine and a blood chemistry analyser. This equipment is going to enable us to provide a great service for our patients who have cancer.
We are extremely grateful to these wonderful gentlemen for the great love that they have shown KHC and for their willingness to continue supporting our work. They have also pledged to get us a 40ft container so we can set up a modern laboratory.
Q. The New Hope Hostel continues to provide a wonderful service to children with cancer and you have had many successful stories. Is there any one story that highlights this?
We have many stories to share about this valuable service that we are providing to children with cancer. Unfortunately many of the children come to us with very advanced stage of the disease and pass away during or after treatment. The one year survival rate of children with cancer at the Uganda Cancer Institute is about 50% mainly due to late presentation and other barriers to access the care such as high cost of accommodation and food for the majority of patients who have to travel from their villages to the city for treatment. That is why patient support services like the hostels are really important social services that enable better access to care and better probability of a child completing treatment and being cured of their cancer.
If you have not seen our video, you can watch it now and see the important support the New Hope Hostel provides.
|I would like to share a story about Joel, a 12 year old albino boy with skin cancer who was from a very poor village in Eastern Uganda. Throughout his life only his mother has cared for him. His father and the entire family denied him because he is an albino. He developed skin cancer due to direct exposure to sunshine whilst in the fields as his mother tilled the land for food. He was diagnosed with skin cancer at a local hospital and was referred to the cancer institute. After a few days in the hospital one of the doctors referred him to our New Hope Hostel for psychosocial support. When he arrived it was clear that he was a very vulnerable child who had a lot of social stigma due to the genetic defect that he had and he had moderate acute malnutrition.
He was put on a special diet, funds were mobilised to help him do a range of medical tests e.g. CT Scans and undergo radiotherapy treatment. We were able to provide all this support due to the generosity of Lillian Lerøy and Magnus Gjervik from Norway, who also provide Joel’s mother a monthly stipend that helps her buy essential commodities and care for Joel without having to worry about a source of income whilst focussing on caring for Joel.
Joel greatly benefited from the support, his health improved tremendously and he was able to play with other children and interact freely for a few months during his treatment. He thoroughly enjoyed an outing to the zoo (left) with the other children.
Five months later and after receiving both chemotherapy and radiotherapy, the oncologists at the UCI found that the disease had advanced and incurable. He is currently receiving end of life palliative care in the form of pain management with oral morphine, wound dressing, counselling and occasional play therapy when he gets some energy. We will continue to support him and his mother all through the terminal stages of his illness and bereavement care will also be provided to his mother after he passes on.
Q. This project is so important to the community, do you have concerns about being able to continue the hostel?
This year one of our main goals is to make the New Hope Hostel more sustainable so that we can provide this service to the children with cancer and their families for many more years. We are therefore going to start a drive to raise funds from everyone who appreciates the service being provided. We are targeting local Ugandans and friends from all over the world. Please watch this space – more details will come soon.
To all our friends, supporters and donors thank you so much for all your friendship and generous donations.
Thank you Dr Sam and to all your incredible staff who continue to provide such worthwhile services and support day in and day out to so many people. You are truly inspirational.