ANNUAL REPORT 2019/20 Hospice Africa Uganda

Hospice Africa Uganda

ANNUAL REPORT 2019/20

HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 1 Table Of Contents List of Tables Table 1: Enrollment at all HAU sites 07 LIST OF TABLES 2 Table 2: Modes of Contacts of Patients Seen on Program 08 Table 3: Daycare attendance at each site 10 LIST OF FIGURES 3 Table 4: Beneﬁciaries of the Road To Care (RTC) Project 12

HAU VISION AND MISSION 3 Table 5: Quantities of morphine powder that have been used annually 15 Table 6: Dispatch quantities for the last ﬁnancial year 16 MESSAGE FROM THE CHIEF EXECUTIVE DIRECTOR 4 Table 7: Over the course of this period, the following activities were held 17 MESSAGE FROM THE BOARD CHAIR 5 List of Figures EXECUTIVE SUMMARY 6 Figure 1: Patients seen at the three HAU sites 2018/2019 07 Figure 2: Cancer / HIV pro le of the new enrollments New admissions (n=1144) 08 1 .0 PATIENT CARE 7 Figure 3: Figure 3: CVWs at MHM at their Update Meeting 13 Figure 4: Students and teachers of the Francophone Initiators course held in 18 2.0 MORPHINE PRODUCTION 15 2019 at HAU- Uganda. (R): Sylvie Dive presenting at conference in Democratic Republic of Congo 3.0 INTERNATIONAL PROGRAMS 17 Figure 5: (L): Dr Anne and Dr Dorothy Olet are welcomed in Ouagadougou airport 18 in Burkina Faso 1 December 2019 (R): TOT students and their facilitators show off 4.0 THE INSTITUTE OF HOSPICE AND PALLIATIVE CARE IN AFRICA (IHPCA) 19 their certi cates in SenegalA

5.0 HAU PUBLICATIONS AND PRESENTATIONS 21

6.0 BRIEF REPORT ON OTHER HAU ACTIVITIES 23 7.0 FINANCE 22 HAU VISION 8.0 CHALLENGES AND LESSONS LEARNED 29 Palliative care for all in need in Africa

9.0 LIST OF TEAM MEMBERS 24 APPENDIX 32 -33 Mission Statement F UNDING APPEAL 34 To bring peace to the suffering in Africa through providing and

APPRECIATION 34 facilitating affordable and accessible palliative care in Uganda and other African countries

22 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l Annual Report l July 2018 to June 2019 ii Table Of Contents List of Tables Table 1: Enrollment at all HAU sites 07 LIST OF TABLES 2 Table 2: Modes of Contacts of Patients Seen on Program 08 Table 3: Daycare attendance at each site 10 LIST OF FIGURES 3 Table 4: Beneﬁciaries of the Road To Care (RTC) Project 12

HAU VISION AND MISSION 3 Table 5: Quantities of morphine powder that have been used annually 15 Table 6: Dispatch quantities for the last ﬁnancial year 16 MESSAGE FROM THE CHIEF EXECUTIVE DIRECTOR 4 Table 7: Over the course of this period, the following activities were held 17 MESSAGE FROM THE BOARD CHAIR 5 List of Figures E XECUTIVE SUMMARY 6 Figure 1: Patients seen at the three HAU sites 2018/2019 07 Figure 2: Cancer / HIV pro le of the new enrollments New admissions (n=1144) 08 1.0 PATIENT CARE 7 Figure 3: Figure 3: CVWs at MHM at their Update Meeting 13 Figure 4: Students and teachers of the Francophone Initiators course held in 18 2.0 MORPHINE PRODUCTION 15 2019 at HAU- Uganda. (R): Sylvie Dive presenting at conference in Democratic Republic of Congo 3.0 INTERNATIONAL PROGRAMS 17 Figure 5: (L): Dr Anne and Dr Dorothy Olet are welcomed in Ouagadougou airport 18 in Burkina Faso 1 December 2019 (R): TOT students and their facilitators show off 4.0 THE INSTITUTE OF HOSPICE AND PALLIATIVE CARE IN AFRICA (IHPCA) 19 their certi cates in SenegalA

5.0 HAU PUBLICATIONS AND PRESENTATIONS 21

6.0 BRIEF REPORT ON OTHER HAU ACTIVITIES 23 7.0 FINANCE 22 HAU VISION 8.0 CHALLENGES AND LESSONS LEARNED 29 Palliative care for all in need in Africa

9.0 LIST OF TEAM MEMBERS 24 APPENDIX 32 -33 Mission Statement F UNDING APPEAL 34 To bring peace to the suffering in Africa through providing and

APPRECIATION 34 facilitating affordable and accessible palliative care in Uganda and other African countries

HOSPICEHOSPICE AFRICA UGAND AFRICAA UGANDAl Annual Reportl Annual l July Report 2018 l to2019 June - 2020 2019 ii3 Message From The Chief Executive Director: Dr. Agasha D. Birungi

all eligible persons interested in palliative care studies to visit our website at https://www.hospice-africa. org/education/ and see our range of both short and long courses available at the IHPCA.

The Department of International Programmes continued to reach the various countries in Africa where palliative care has been launched. The team engaged the alumni of the initiators’ courses both English speaking and French speaking, offering mentorship and other forms of technical support in the endeavour to promote and sustain palliative care services in their countries. https://www.hospice-africa. Greetings from Hospice Africa Uganda (HAU). We are org/international-programs/ pleased to inform you that we have ended yet another year of compassionate service to all that we could HAU was not spared by the effects of the COVID-19 reach with palliative care. We are indeed honored to pandemic. The last quarter of the year saw HAU have served you despite the challenging environment. teams at all the three sites shocked with a country-

Over the course of this year 2019/20, we offered position that HAU was already in and one that we were palliative care to 2,702 patients across our 3 sites, hoping to come out of through planned fundraising and cumulatively 34,993 patients have been cared for events. We trudged through this situation, serving since 1993. Most of our patients have cancer, an illness patients in the best possible way we could. With deep that has far-reaching implications for families. HAU gratitude, we extend our thanks to the Government of is at the forefront of supporting these patients and Uganda COVID-19 task force, corporate organisations, their carers, relieving their symptoms and working Private sector, the church,the HAU board members, the founding bodies of HAU, all HAU members, friends towards improving their quality of life. Our team at the and well-wishers for the donations that came to help Morphine Production Unit (MPU) worked passionately HAU meet the Standard Operating Procedures set by and tirelessly to ensure availability of oral liquid WHO and Government of Uganda to enable the service morphine solution, a drug used for relief of moderate continue at a small scale rather than shutting down. – severe pain in life-threatening illnesses and meeting the standards set by the National Drug Authority. Our vision calls on us to deliver palliative care for all who need it and so we move into the next year with At HAU, we are certain that education is a major means hope and faith that we will be able. To everyone reading to spread this model of compassionate care guided by this report, you are dear to us and we wish you nothing the hospice ethos to other countries in Africa. This year less than excellent health, prosperity and peace. our Institute of Hospice and Palliative Care in Africa Dr. Agasha D. Birungi in various academic programmes in palliative care. Chief Executive Director, Hospice The IHPCA now has a Masters in Palliative care offered Africa Uganda

1 44 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 Message From The Chief Message from the Board Executive Director: Chair: MR. TOM DUKU commendable results which were able to see HAU Dr. Agasha D. Birungi through to the end of the first phase financial year. Special thanks go to The Foundation which has worked hand in hand with the HAU Board to relentlessly all eligible persons interested in palliative care studies support HAU through various fundraising efforts. to visit our website at https://www.hospice-africa. The second half of this business year took on an org/education/ and see our range of both short and unprecedented twist when the COVID-19 pandemic long courses available at the IHPCA. hit the world. Uganda and HAU activities especially were not spared by the lock downs associated with the The Department of International Programmes COVID-19 pandemic standard operating procedures. continued to reach the various countries in Africa COVID 19 presented unchartered waters which further where palliative care has been launched. The team escalated the already ailing financial position of HAU. engaged the alumni of the initiators’ courses both Our patient service was severely affected. On this English speaking and French speaking, offering note I would like to express my deepest appreciation mentorship and other forms of technical support in first of all to the HAU team members especially the the endeavour to promote and sustain palliative care “frontline clinical team”, supported by members of the services in their countries. https://www.hospice-africa. Board of Directors, The Foundation, Dr. Anne Merriman Greetings from Hospice Africa Uganda (HAU). We are org/international-programs/ (Founder) and all our well-wishers who went out of pleased to inform you that we have ended yet another HAU was not spared by the effects of the COVID-19 their way and weathered storms to ensure that HAU year of compassionate service to all that we could remained financially sustained through the shock reach with palliative care. We are indeed honored to pandemic. The last quarter of the year saw HAU teams at all the three sites shocked with a country- Special salutation from I and the Board of Directors, waves of the COVID – 19 period. have served you despite the challenging environment. Hospice Africa Uganda (HAU). I take this opportunity to thank all of you in your individual and corporate We may not be out of the muddy waters but by the fact Over the course of this year 2019/20, we offered position that HAU was already in and one that we were hoping to come out of through planned fundraising capacities for the support you continually offer that we were able to glide into yet another financial palliative care to 2,702 patients across our 3 sites, towards our esteemed patients and their families. year 2020/2021, I can boldly say that we can get HAU and cumulatively 34,993 patients have been cared for events. We trudged through this situation, serving patients in the best possible way we could. With deep The year 2019/2020 was characterized by humongous to shore. I look forward to a more stable and fruitful since 1993. Most of our patients have cancer, an illness challenges ranging from governance through to 2020/2021 even as we strive through this “new normal” that has far-reaching implications for families. HAU gratitude, we extend our thanks to the Government of Uganda COVID-19 task force, corporate organisations, financial sustainability. You have all put your best caused by the COVID -19 pandemic. is at the forefront of supporting these patients and foot forward to keep HAU afloat. We are not out of the their carers, relieving their symptoms and working Private sector, the church,the HAU board members, the founding bodies of HAU, all HAU members, friends mucky waters yet but I can confidently say that with Once again as the African Proverb says ‘if you want to towards improving their quality of life. Our team at the and well-wishers for the donations that came to help your kind of synergy we shall make it. go far. Go together”, Morphine Production Unit (MPU) worked passionately HAU meet the Standard Operating Procedures set by and tirelessly to ensure availability of oral liquid WHO and Government of Uganda to enable the service In the first half of this business year 2019/2020, HAU morphine solution, a drug used for relief of moderate continue at a small scale rather than shutting down. membership was revamped and a new Board was – severe pain in life-threatening illnesses and meeting appointed by the AGM. This reasonably addressed the the standards set by the National Drug Authority. Our vision calls on us to deliver palliative care for all core governance challenge at HAU. The “new” Board who need it and so we move into the next year with immediately engaged the sustainability question Mr. Tom Duku At HAU, we are certain that education is a major means hope and faith that we will be able. To everyone reading by drafting the strategic plan (SP) 2020 – 2025 and to spread this model of compassionate care guided by this report, you are dear to us and we wish you nothing conducted an Organizational Capacity Assessment Chairperson – HAU Board the hospice ethos to other countries in Africa. This year less than excellent health, prosperity and peace. (OCA) to tease out gaps within HAU. A multi-pronged Hospice Africa Uganda our Institute of Hospice and Palliative Care in Africa Fundraising strategy was adopted which yielded Dr. Agasha D. Birungi in various academic programmes in palliative care. Chief Executive Director, Hospice The IHPCA now has a Masters in Palliative care offered Africa Uganda

1 2 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 5 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 Executive Summary The Hospice Africa Uganda (HAU) annual report 2019/20 highlights progress, challenges, and lessons learnt.

The HAU vision is “Palliative care for all in need in Africa”. The HAU mission is, “To bring peace to the suffering in Africa through providing and facilitating affordable and accessible palliative care in Uganda and other African countries”. The vision and mission in line with the hospice ethos have guided Hospice Africa Uganda to achieve its objectives for 2019/20.

In the year 2019/20, a total of 2,702 patients were seen across all the three sites (Hospice Kampala, Mobile Hospice Mbarara and Little Hospice Hoima). This brings the cumulative number of patients ever seen since 1993 to 34,993. We had 1,144 new patients enrolled on the HAU program which was a 22% reduction in new had cancer.

The patients were seen at home, hospital, outreach, roadside clinics, daycare and several were reviewed on telephone during the lockdown to mitigate COVID-19 spread. Community Volunteer Workers were also very active referring patients to HAU sites.

The International Programmes team met participants from all over Africa, some on placement in Uganda, others met overseas and others virtually on Zoom. The planned Anglophone and Francophone courses could not happen in the latter half of the year due to the restrictions occasioned by the COVID-19 pandemic. They are slated for 2021. The Institute of Hospice and Palliative care in Africa (IHPCA) had 69 students enrolled on academic programmes (56 BSc, 2 DPC, 2 DCPC and 9 Postgraduate Diplomas) and 2 students being supported with their PhD. 26 students graduated with Bachelor of Science Degree, 29 students graduated with Diploma in Clinical Palliative of the postgraduate diploma which was launched in 2017. Once again, the Morphine Production Unit underwent a rigorous inspection by National Drug Authority to ensure that the unit met the current Good Manufacturing Practice standards. We have a suitability of premises license and a license to operate under the supervision of a licensed pharmacist from the National Drug Authority. The main challenges that Hospice Africa Uganda faced were; the COVID-19 pandemic and inadequate funding. Addressing the challenges is a combined effort from all our supporters. HAU has a new Strategic plan 2020 - 2025 which present potential solutions as opportunities

We are eternally grateful to all our donors and partners, past and present for their commitment towards the advancement of palliative care in Africa and the vision of Hospice Africa. The teams, board and management of Hospice Africa Uganda are committed to ensuring that no one continues to suffer or die in pain. We will make palliative care available to all in need in Africa.

3 66 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 Executive Summary 1.0 Patient Care The Hospice Africa Uganda (HAU) annual report 2019/20 highlights progress, challenges, and lessons learnt. 1.1 Patients’ care outputs This year we had a total of 2,702 patients seen across all the three sites, 1126 (42%) were seen at Mobile Hospice The HAU vision is “Palliative care for all in need in Africa”. The HAU mission is, “To bring peace to the suffering Mbarara (MHM), 810 (30%) were seen at the Kampala site (HKLA) and 766 (28%) were seen at Little Hospice Hoima in Africa through providing and facilitating affordable and accessible palliative care in Uganda and other African (LHH). The cumulative number of patients seen at HAU in all the three sites reached 34,993 patients since inception. countries”. The vision and mission in line with the hospice ethos have guided Hospice Africa Uganda to achieve its objectives for 2019/20. Figure 1: Patients seen at the three HAU sites 2018/2019 In the year 2019/20, a total of 2,702 patients were seen across all the three sites (Hospice Kampala, Mobile Hospice Mbarara and Little Hospice Hoima). This brings the cumulative number of patients ever seen since 1,200 1993 to 34,993. We had 1,144 new patients enrolled on the HAU program which was a 22% reduction in new 1,000 1,126 had cancer. 800 810 600 The patients were seen at home, hospital, outreach, roadside clinics, daycare and several were reviewed on 766 telephone during the lockdown to mitigate COVID-19 spread. Community Volunteer Workers were also very 400 active referring patients to HAU sites. 200

The International Programmes team met participants from all over Africa, some on placement in Uganda, 0 others met overseas and others virtually on Zoom. The planned Anglophone and Francophone courses could MHM HKLA LHH not happen in the latter half of the year due to the restrictions occasioned by the COVID-19 pandemic. They are HAU sites slated for 2021. The Institute of Hospice and Palliative care in Africa (IHPCA) had 69 students enrolled on academic programmes Referrals (56 BSc, 2 DPC, 2 DCPC and 9 Postgraduate Diplomas) and 2 students being supported with their PhD. 26 A total of 1,992 referrals were received across the sites, out of which only 1,144 (57%) were admitted on HAU program students graduated with Bachelor of Science Degree, 29 students graduated with Diploma in Clinical Palliative and the 848 were served on consultation basis. of the postgraduate diploma which was launched in 2017. All through the year, but especially during the COVID19 pandemic HAU continued to receive requests to go and visit patients who were very far beyond our catchment boundary. This demonstrates that there are many patients who Once again, the Morphine Production Unit underwent a rigorous inspection by National Drug Authority to ensure remain unreached for whom Palliative care was inaccessible. that the unit met the current Good Manufacturing Practice standards. We have a suitability of premises license and a license to operate under the supervision of a licensed pharmacist from the National Drug Authority. New Admissions at HAU The main challenges that Hospice Africa Uganda faced were; the COVID-19 pandemic and inadequate funding. There were 1,144 new enrollments at the three sites, compared to 1,467 reported in 2018/19, a 22% reduction. Of the Addressing the challenges is a combined effort from all our supporters. HAU has a new Strategic plan 2020 - new enrollments, HKLA had 384 (34%), MHM had 572 (50%) while LHH had 188(16%). The average age of both new 2025 which present potential solutions as opportunities male and female patients is 52 years.

We are eternally grateful to all our donors and partners, past and present for their commitment towards the Table 1: Enrollment at all HAU sites advancement of palliative care in Africa and the vision of Hospice Africa. The teams, board and management of Hospice Africa Uganda are committed to ensuring that no one continues to suffer or die in pain. We will make HAU site Male Female Total palliative care available to all in need in Africa. Little Hospice Hoima (LHH) 78 110 188 Hospice Kampala (HKLA) 147 237 384 Mobile Hospice Mbarara (MHM) 280 292 572 Total 505 (44%) 639(56%) 1,144 Average age 52 years 52 years

3 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 7 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 Figure 2: Cancer / HIV profile of the new enrollments New admissions (n=1144)

Others, 31, 3%

HIV, 30, 3%

Ca/HIV, 188, 16%

Cancer, 893, 78%

Figure 3: The top five cancers in new patients at HAU

Among the new patients, 78% were cancer patients, 16% had both cancer and HIV and 3% of the patients had various diagnoses which required Palliative Care- as shown in Figure 2 below

The top five cancers among the new patients were Cancer of the cervix, Breast cancer, Prostate cancer, cancer of the stomach and Oesophageal cancer. This has been the case over the last two consecutive years at HAU.

ModesTable 2: of Modes Contacts of Contacts of Patients of SeenPatients on Program seen on program

Mode of contact No of patients No of patients No. of contacts No. of contacts 2018/19 2019/20 2018/19 2019/20 OPD 3,090 2822 9,769 7957 Outreach 128 151 856 577 Road Side Clinics 17 20 205 62 Home Visit 206 328 1,711 890 Hospital Visit 400 453 1,820 990 Health Facility-Other 71 69 312 212 Telephone contacts 348 1495 1,877 2362

5 88 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 Figure 2: Cancer / HIV profile of the new enrollments HAU registered an increase in the patients and contacts reached by telephone because it was the main means New admissions (n=1144) of reaching patients during the last quarter of the year when Uganda experienced a countrywide lockdown in an effort to curb the Covid-19 pandemic.

Others, 31, 3% Outreaches

HIV, 30, 3% These were conducted at all the three sites. Hospice Kampala (HKLA) conducted outreaches to Namirembe church hospital Mukono which is about 35km away from Kampala. Mobile Hospice Mbarara (MHM) conducted outreaches to Ishaka Adventist Hospital and Isingiro Ca/HIV, 188, 16% district, targeting the refugee community as well. Little Hospice Hoima (LHH) conducted two outreaches to Kyangwali refugee settlement outreach which is 82 km away from Hoima town and Masindi which is 60 km away.

Activities carried out at outreaches include clinical reviews, replenishment of medications, health education and referral for other services.

Road Side Clinics This is unique to MHM in order to reach patients outside the catchment area but living on the road to the outreach. Cancer, 893, 78% Patients are seen under a tree or at a nearby health facility or school or shop agreed on by the MHM team and the patients.

Hospital Visits All the three HAU sites conduct hospital visits to extend palliative care services to patients in the hospitals, especially the cancer patients. This is done once a week. HKLA visits Mulago National Referral Hospital and they Figure 3: The top five cancers in new patients at HAU see adults and children admitted at the Uganda Cancer Institute (UCI). MHM visits patients at the Mbarara regional Among the new patients, 78% were cancer patients, 16% had both cancer and HIV and 3% of the patients had referral hospital seeing patients at the oncology outpatients and oncology ward. LHH visits the Hoima regional various diagnoses which required Palliative Care- as shown in Figure 2 below referral hospital where there is a palliative care unit set up but the staffing is very low.

The top five cancers among the new patients were Cancer of the cervix, Breast cancer, Prostate cancer, cancer 1.2 Children on the Program: of the stomach and Oesophageal cancer. This has been the case over the last two consecutive years at HAU. During the reporting period, 188 children received palliative care as follows; 65 at LHH, 46 at MHM and 77 at HKLA. Majority of the children had cancer as the primary diagnosis as shown in the figure below. The commonest cancers are Rhabdomyosarcoma, Leukaemia, Acute Lymphoma, Burkitt’s lymphoma, Osteosarcoma and Brain Tumours. Modes of Contacts of Patients Seen on Program

5 6 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 9 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 1.3 The Daycare The main aim of the daycare is to improve patients’ and carers’ quality of life through psychosocial, physical and spiritual support. Patients for daycare are carefully selected using the criteria in the guidelines and they spend at come to the HAU sites where they spend a day and are taken care of by the nurses and some volunteers. Their share experiences that encourage others to cope with whatever challenges are associated with their conditions. During the year 2019/20, average daycare attendance was 18 people at LHH, 17 people at MHM and 26 people at HKLA. Due to COVID- 19 we were not able to hold day cares in the last quarter of 2020.

Table 3: Daycare attendance at each site

1.4 Bereavement Care and Memorial Service

We registered 764 deaths across all the three sites. LHH registered 144 deaths and all received bereavement care (28 visited at home, 11 were counselled from the LHH site while 104 were called on phone). One family received bereavement care at an outreach.

MHM registered 123 deaths and all received bereavement care (37 were visited at home to see how the families were coping while 86 were bereaved on the phone). The team had 8 bereavement meetings to discuss how the patients and families were helped, challenges and opportunities to review for future improvement in our care for patients. During these meetings, some carers reported fatigue because they had no one to relieve them from the task of caregiver until their patients died. HKLA registered 331 deaths. Across the three sites, an ecumenical the memorial service was held during the reporting period as scheduled in Novem- ber 2019. The attendance was very good as we received 76 patients and carers at HKLA, 120 patients and carers at MHM and 156 patients and carers at LHH. The religious leaders and choir members also attended as planned. The carers gave testimonies on how Hospice helped them in the care of their patients. They lit candles at the end of the service. We shared a meal and everyone went home happy Figure 6: Candle lighting at memorial services at MHM and satisﬁed.

7 1010 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2 1.3 The Daycare 1.5 Patients’ Christmas Party The main aim of the daycare is to improve patients’ and carers’ quality of life through psychosocial, physical and This event is held in yearly at all the three HAU sites. It is attended by both patients and carers. It’s one of those spiritual support. Patients for daycare are carefully selected using the criteria in the guidelines and they spend at events we all look forward too, for some of the patients it could be their last Christmas. We registered 586 patients and carers. There were 251 attendees at HKLA, 130 attendees at MHM and 205 attendees at LHH. The Christmas come to the HAU sites where they spend a day and are taken care of by the nurses and some volunteers. Their they are still valued as human beings and loved. The party always ends with giving out patients Christmas package share experiences that encourage others to cope with whatever challenges are associated with their conditions. to both adults and children. During the year 2019/20, average daycare attendance was 18 people at LHH, 17 people at MHM and 26 people at HKLA. Due to COVID- 19 we were not able to hold day cares in the last quarter of 2020.

Table 3: Daycare attendance at each site

1.6 Psychosocial Support Janzi Band entertains patients durint their Christmass party 1.4 Bereavement Care and Memorial Service

We registered 764 deaths across all the three sites. 1.60 Give a Chance project LHH registered 144 deaths and all received bereavement care (28 visited at home, 11 were counselled from the LHH The Give a Chance (GAC) project continued to meet the objective of empowering orphans and/or vulnerable site while 104 were called on phone). One family received bereavement care at an outreach. children (OVC) selected from families whose parents died of cancer and HIV/AIDS and were on HAU care program or children who are cancer survivors to attain education for their growth and development. The main objective of MHM registered 123 deaths and all received bereavement care (37 were visited at home to see how the families were this project is to reduce children’s vulnerability through provision of education support in primary, secondary and coping while 86 were bereaved on the phone). The team had 8 bereavement meetings to discuss how the patients vocational levels, care and support, and provide socio-economic security to the households which they come from. and families were helped, challenges and opportunities to review for future improvement in our care for patients. We had a total of 50 children (27 boys and 23 girls) supported by Give a chance of which 12 were supported by GAC During these meetings, some carers reported fatigue because they had no one to relieve them from the task of Denmark, 33 by GAC UK, 2 by GAC USA and 3 by GAC France. These children are supported with tuition in their caregiver until their patients died. primary, secondary and vocational training.

HKLA registered 331 deaths. In the year 2019/20 seven completed senior four and two completed primary level seven. Since March 2020, Across the three sites, an ecumenical the memorial service schools have been closed due the COVID-19 pandemic. was held during the reporting period as scheduled in Novem- ber 2019. The attendance was very good as we received 76 1.61: Patient Support Fund patients and carers at HKLA, 120 patients and carers at MHM and 156 patients and carers at LHH. The religious leaders and supported through a comfort fund. The support included actual items procured to meet basic needs (mattresses, choir members also attended as planned. beddings, food, rent payment among others) and also included availing patients with funds to access services The carers gave testimonies on how Hospice helped them in the care of their patients. They lit candles at the end of the poor and most vulnerable patients. service. We shared a meal and everyone went home happy Figure 6: Candle lighting at memorial services at MHM and satisﬁed.

7 8 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 11 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 their families because their livelihoods were affected by the lockdown. We received assistance from Government of Uganda, Stanbic Bank Uganda, Irish Embassy, Phaneroo Ministries International, Turner and Townsend, Palliative Care Association of Uganda (PCAU), Coffee At Last, the founding bodies of HAU particularly Hospice Africa UK, Hospice Africa USA and individual well-wishers who came to the rescue of the patients and provided funds for food relief during that season.

1.7 Road to Care Program The Road to care (RTC) program funds a project titled Supporting the Management of Women with Early Cervical Cancer in Western Uganda whose goal is to improve the quality of life of vulnerable women with early cervical cancer from western Uganda through facilitating their access to curative services. In the period July 2019 to June 2020, 247 women were supported for screening, investigations, radiotherapy and Chemotherapy. Of these, 226 (91%) women were newly enrolled on the program, and 21(9%) continued care from the previous year.

Table 4: Beneficiaries of the Road To Care (RTC) Project

ACTIVITY DESCRIPTION Jul - Sep Oct - Dec Jan - Mar Apr - Jun 2019 2019 2020 2020

Total women supported in the quarter 110 73 71 39

New patients screened in the quarter and 89 51 54 32 had a biopsy done

44 36 38 22

25 19 16 15 cervix

New patients referred for Radiotherapy 20 7 7 10

Total patients for radiotherapy at UCI in 20 7 7 10 the quarter

Patients that accessed radiotherapy 20 14 12 9

Patients that accessed chemotherapy and 0 2 5 3 pre-chemo meds on the program

9 1212 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 1.8 Strengthening Palliative Care in the The CVWs meet patients in their homes or at their work Community: The Community Volunteer Worker (CVW) places like the garden, shops, bars etc and they provide their families because their livelihoods were affected by the lockdown. We received assistance from Government Project them with basic health education. They target people of Uganda, Stanbic Bank Uganda, Irish Embassy, Phaneroo Ministries International, Turner and Townsend, Palliative HAU has a total of 84 CVWs across the three sites. with chronic conditions and try to establish if they are Care Association of Uganda (PCAU), Coffee At Last, the founding bodies of HAU particularly Hospice Africa UK, receiving care and if they are adherent. When they Hospice Africa USA and individual well-wishers who came to the rescue of the patients and provided funds for food At MHM, there were 30 active CVWs (14 female and 16 identify a palliative care patient with cancer, they refer relief during that season. male) in the reporting period. The CVWs referred a total to an HAU site. They also carry out wound dressing for of 34 patients to MHM for various services and all were those who are not able or are not trained on the way to 1.7 Road to Care Program enrolled on the HAU program. look after wounds especially patients with cancer. The Road to care (RTC) program funds a project titled Supporting the Management of Women with Early Cervical Cancer in Western Uganda whose goal is to improve the quality of life of vulnerable women with early cervical At LHH, there were 35 active CVWs (19 male and 16 1.9 Continuous Medical Education and Patient cancer from western Uganda through facilitating their access to curative services. In the period July 2019 to June female). They referred 17 patients, 6 enrolled on the HAU Care Partnerships 2020, 247 women were supported for screening, investigations, radiotherapy and Chemotherapy. Of these, 226 program while 11 were seen as consultations. (91%) women were newly enrolled on the program, and 21(9%) continued care from the previous year. Journal club and case conferences have continued At HKLA, there were 19 active CVWs (10 male, 9 female). to be held across the three sites weekly to enable the HKLA received 20 referrals from CVWs and 8 were team stay up to date with Evidence based practices. enrolled on HAU program. At MHM DHOs office organized a HMIS training which was attended by the data clerk who also taught team ACTIVITY DESCRIPTION Jul - Sep Oct - Dec Jan - Mar Apr - Jun The CVWs also reviewed several other non-cancer members how to use and collect data in the new HMIS 2019 2019 2020 2020 patients and non-palliative care patients. books provided by MoH.

Total women supported in the quarter 110 73 71 39

New patients screened in the quarter and 89 51 54 32 had a biopsy done

44 36 38 22

25 19 16 15 cervix

New patients referred for Radiotherapy 20 7 7 10

Total patients for radiotherapy at UCI in 20 7 7 10 the quarter

Patients that accessed radiotherapy 20 14 12 9

Patients that accessed chemotherapy and 0 2 5 3 pre-chemo meds on the program

Figure 3: CVWs at MHM at their Update Meeting

9 10 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 13 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 1.9 Patient Story of the pick-up refused as he feared his car being impounded if they found there a person without a ‘BE QUICK AND TAKE THE PATIENT’ travel pass. The uncle of the patient insisted that his friend’s car would be protected. To this regard, he A 68yrs old HIV positive patient with advanced head decided to get up as early as 5:30 am so he would beat and neck cancer had quite an experience getting security curfew patrols. No sooner had they reached care during the COVID-19 lockdown. He had been the main road, than they noticed the police were a builder all his life and he had never built a house stopping every moving vehicle. The driver parked the for himself. He had 10 children with two different car at a distance and ran away into hiding. Then the women of whom one was deceased. He became uncle had to think quickly, he put up his hand and told so sick and he was taken to nearly every hospital. the the police that they have a patient who is very sick and the car has run out of fuel and someone has carcinoma, poorly differentiated keratinizing type gone to get fuel. involving skeletal muscles. When they were planning to get chemotherapy from Uganda Cancer Institute When the policeman glanced at the patient, he replied (UCI), he ran out of money. He was taken back home “please be quick and take the patient”. So, the uncle with all the pain and was unable to eat. The land lord called the driver on phone to come out of his hiding demanded his rent, so the neighbor called the uncle and continue with the journey. The patient was really in Mbarara and said that the man had died; they very sick, in severe pain, dehydrated and he could should go and pick the dead body. When the uncle not swallow anything. At MHM, he was rehydrated arrived, he found the man breathing and he took him and given pain relief. When he gained some strength, into his home where a community volunteer worker he spoke up and thanked the nurses. The uncle was (CVW) was called to see the patient and he referred overwhelmed and he asked if there was any medicine them to Hospice. which could revive the patient back to normal. He was counseled on End of Life Care and he took the patient back home because if he died in hospital it would be another hassle to take the body home. The patient died within a week, pain-free in the comfort of his uncle’s home.

Indeed, in hard and unprecedented times like this Covid-19 pandemic, the vulnerable become

Fortunately, with creativity, innovation, quick thinking and empathy, this suffering can be mitigated.

Martha Rabwoni, Health Services Coordinator, Mobile Now the challenge was how to get the patient to Hospice Mbarara hospice. This was a challenge because all public and private transport were stopped during the lockdown and movement of any nature, worse still across districts was to be approved by the Resident District Commissioner which would cause more delay on the patient. The uncle asked his friend who had a pick up (pictured) to give them a ride to Mbarara. The owner

11 1414 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 1.9 Patient Story 2.0 Morphine Production of the pick-up refused as he feared his car being 2.1 Background impounded if they found there a person without a Hospice Africa Uganda has over the last 27 years reconstituted Morphine powder into oral liquid Morphine. ‘BE QUICK AND TAKE THE PATIENT’ travel pass. The uncle of the patient insisted that his This was initially done in a sink and bucket, very simple and yet effective. Oral liquid Morphine is the pain killer friend’s car would be protected. To this regard, he recommended by the World Health Organisation for the treatment of moderate to severe pain associated with A 68yrs old HIV positive patient with advanced head decided to get up as early as 5:30 am so he would beat cancer and other life threatening illnesses. Oral liquid morphine is part of the essential drugs for palliative and neck cancer had quite an experience getting security curfew patrols. No sooner had they reached care. care during the COVID-19 lockdown. He had been the main road, than they noticed the police were a builder all his life and he had never built a house stopping every moving vehicle. The driver parked the In December, 2019 HAU MPU was inspected by the National Drug Authority and passed the inspection to acquire for himself. He had 10 children with two different car at a distance and ran away into hiding. Then the a manufacturing license and a certificate of suitability of premises valid for 3 years. The manufacturing license women of whom one was deceased. He became uncle had to think quickly, he put up his hand and told assures that HAU reconstitutes morphine according to the current Good Manufacturing Practices (GMP). so sick and he was taken to nearly every hospital. the the police that they have a patient who is very sick and the car has run out of fuel and someone has 2.2 Powder Consumption gone to get fuel. carcinoma, poorly differentiated keratinizing type The data available from 2004 to date shows quantities of morphine powder that have been used annually involving skeletal muscles. When they were planning for the reconstitution or manufacture of oral liquid morphine. Starting from a mere 1.3kg in 2004, it is very When the policeman glanced at the patient, he replied to get chemotherapy from Uganda Cancer Institute evident that there is a rising trend which is in line with all the positive advocacy and interventions towards “please be quick and take the patient”. So, the uncle (UCI), he ran out of money. He was taken back home improving palliative care in Uganda. with all the pain and was unable to eat. The land lord called the driver on phone to come out of his hiding demanded his rent, so the neighbor called the uncle and continue with the journey. The patient was really Table 5: Quantities of morphine powder that have been used annually in Mbarara and said that the man had died; they very sick, in severe pain, dehydrated and he could should go and pick the dead body. When the uncle not swallow anything. At MHM, he was rehydrated arrived, he found the man breathing and he took him and given pain relief. When he gained some strength, into his home where a community volunteer worker he spoke up and thanked the nurses. The uncle was (CVW) was called to see the patient and he referred overwhelmed and he asked if there was any medicine them to Hospice. which could revive the patient back to normal. He was counseled on End of Life Care and he took the patient back home because if he died in hospital it would be another hassle to take the body home. The patient died within a week, pain-free in the comfort of his uncle’s home.

Indeed, in hard and unprecedented times like this Covid-19 pandemic, the vulnerable become

Fortunately, with creativity, innovation, quick thinking and empathy, this suffering can be mitigated.

Martha Rabwoni, Health Services Coordinator, Mobile 2.2 Oral liquid Morphine Distribution Data Now the challenge was how to get the patient to Hospice Mbarara HAU supplies oral liquid Morphine to the Government of Uganda through the National Medical Stores (NMS) hospice. This was a challenge because all public and under the Public Private Partnership as enshrined under the Public Private Partnership Act 2015. private transport were stopped during the lockdown and movement of any nature, worse still across The National Medical Stores then supplies to the public health facilities accredited to provide palliative care districts was to be approved by the Resident District in Uganda. NMS also supplies to Joint Medical Stores (JMS) who supply to the private not for profit and private Commissioner which would cause more delay on the for profit facilities accredited to provide palliative care in Uganda. patient. The uncle asked his friend who had a pick up (pictured) to give them a ride to Mbarara. The owner

11 12 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 15 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HAU has dispatched oral Morphine as follows. 3.0 Inte rnationaland ProgramsChallenges 0 . 7 International Programmes (IP) commenced in 2000, to carry forward the vision of Hospice Africa in countries of Africa with, training and advocacy. The global COVID19 pandemic adversely affecommendations tedc planse anR d operations of IP. the the in reduction a and funding in reduction a suffered HAU 2019, and 2017 Between Prof. Dr Anne Merriman, Professor of Palliative Medicine (Makerere) and Founder HAU handed over a a visits hospital and home of the in reduction sites, three the all for radius catchment responsibilities and leadership of the International Programmes to the new Clinical and International Green 500ml (Boxes) Green 250ml (Boxes) Red 250ml (Boxes) Month Programmes Director, Dr Eddie Mwebesa. Bernadette Basemera who was the Anglophone Nurse trainer retired of number the in drop steady a but supported be could that budget leaner a to led operations from service at HAU/ IP- after 20 years dedicated service to HAU, she will be dearly missed. is Uganda in care palliative for need the that say to not is It contacts. of number the and reached patients July’ 19 223 75 us motivate challenges These more. much do could we the had we if that rather but OTvaerble th 7:e cOouverrse cou ofr sethis o fp thiseriod, period, the foll thoewing follo awingctiviti acetivitis weeres hweld:ere held creative. be and learn to Sept’ 19 259 128

Country Period Main Activity Out come Nov’ 19 263 151

Uganda 24th June to Francophone Course 18 students from 11 African countries were trained. Dec’ 19 185 445 and assessment 26th July holistic 2 0- 19 patient the of aspect every on focuses Courthat se aone tt rais cted 1 newspecialty countcare ry, Djiboutipalliative & alsoThe patients. of number the to compared small too is providers of team mothe r e studentswhen from tmaintain h e to C aribbeasy e an not c ountis ry This Haiti. care. Mar’ 20 148 72 All students successfully completed the course & some have started PC services in their country. April’ 20 182 447 a as to learned We business. / organisation any of direction Hospicestrategic Burkinfor a, a palliimportant atiis ve caplan re coordinstrategic atingA organisation, was already established by Dr Martin, what what HAU, at are we who clearly plan The – 2020 plan strategic new the on while team 110 8 a previous trainee. May’ 20 committed are and it own members team the ourselves. measure will we how and do should we what we

16th to 27th Hosted 2 Nigerian students for Placement 8 Uganda Teaching and placement plan. this on delivering to TOTAL 1,370 1,318 Sept 2019 As As Democcare. ratic palliative of cause the advance us help will fraternity care palliative the within together 3. 21st Oct to 3rd Teaching and advocacy Teaching and advocacy for Palliative care at a reach Republicreach only of can we can we as many as train and can we as many as serve we that us to matters it HAU Congo Nov 2019 nursing school in Congo hospices hospices other from learning and with sharing past the in opportunities several in participated We few. a Burkina Faso 1-5 December Teaching and advocacy. A conferen ce lot. a M et with learned t he Minisand ter of Heproviders alth wcare ho was eagerpalliative toand 2019 funded by Organisation for the Prevention put into place the necessary structures to import of Intense Suffering (OPIS), through affordable morphine powder to make oral morphine their CED, Dr Jonathan Leighton. Held for patents at home. Conference was well attended in Ouagadougou, the capital of Burkina and was a start to advocating with the Government Faso- one of the poorest countries for palliative care. Also met with IP Alumni joined in Africa, with a refugee problem and together as Hospice Burkina, their palliative care unrest. association.

Senegal 9th to 20th Training of Health workers on Mercy Trained 37 health professionals. Students Dec 2019 ships recognized the need for home-based PC in Preparation of curriculum and materials Senegal. Increased HAU’s visibility in Senegal We learned to work as a team team a for PC as in Onco-Pediatric Instituwork te Pana-to especially at the Ministrylearned o f Health. MadeWe follow up Africa (in partnership with a doctor From visits to Alumni, Dantec and Maadji. Students were Guinea –Conakry) eager to undertake longer courses to gain a deeper while working on the new new the on understanworking ding of PC. while

Senegal Feb 2020- to Preparation of Francophone and Curriculum accepted. Teaching materials strategic plan 2020 – 2025. end of FY (and2025. Anglop– hone Initiators c2020 ou rse 2020 plan developed& shared. strategic continuing) Review of the training manuals for the Ongoing preparation of assignment and initiators courses examinations

Uganda March- June Prepare and conduct a survey on Courses postponed due to COVID19 pandemic 2020 “Palliative Care Services in Africa in the Results are being analysed guidelines for service face of Covid-19.” delivery drafted

13 14 19 1616 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 17 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 19/20 0 2 REPORT AL U N N A l A D N A G U A C AFRI HOSPICE HAU has dispatched oral Morphine as follows. 3.0 Inte rnationaland ProgramsChallenges 0 . 7 International Programmes (IP) commenced in 2000, to carry forward the vision of Hospice Africa in countries of Africa with, training and advocacy. The global COVID19 pandemic adversely affecommendations tedc planse anR d operations of IP. the the in reduction a and funding in reduction a suffered HAU 2019, and 2017 Between Prof. Dr Anne Merriman, Professor of Palliative Medicine (Makerere) and Founder HAU handed over a a visits hospital and home of the in reduction sites, three the all for radius catchment responsibilities and leadership of the International Programmes to the new Clinical and International Green 500ml (Boxes) Green 250ml (Boxes) Red 250ml (Boxes) Month Programmes Director, Dr Eddie Mwebesa. Bernadette Basemera who was the Anglophone Nurse trainer retired of number the in drop steady a but supported be could that budget leaner a to led operations from service at HAU/ IP- after 20 years dedicated service to HAU, she will be dearly missed. is Uganda in care palliative for need the that say to not is It contacts. of number the and reached patients July’ 19 223 75 us motivate challenges These more. much do could we the had we if that rather but OTTablevaerble th 7:e cOverOouverrse coursecou ofr sethis ofo fp thiseriod, period,period, the foll thethoewing followingfollo awingctiviti activitiesacetivitis weeres hwereweld:ere heldheld creative. be and learn to Sept’ 19 259 128

Country Period Main Activity Out come Nov’ 19 263 151

13 14 19 HOSPICEHOSPICE AFRI AFRICACA U UGANDAGANDA l l Annual Annual R Reporteport l l 2 2019019 - - 2020 2020 1717 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 19/20 0 2 REPORT AL U N N A l A D N A G U A C AFRI HOSPICE The Anglophone and Francophone courses for 2020 were postponed to the latter half of 2020 hoping the COVID19 pandemic will b7e cont.0rolled. Challenges and IP team is developingRe anc onliommendationsne/ virtual learning section of the Initiators course which will likely reduce both OtBetweenher IP engaged 2017 and tra v2019,els for HAU adv sufferedocacy an da teaching we reductionre postpo nined funding due to tandhe C ovid-19 restric ations. reduction The tr inav elsthe tocatchment the following radius countri fore alls; Ethiopithe threea, Mal sites,awi, reduction Senegal, Finra thence and Liberia of w ere put on home hold anduntil hospital the restri visitsctions a for travel are lifted. operations led to a leaner that could be supported but a drop in the number of patients reached and the number of contacts. It is not to that the need for palliative care in Uganda is but rather that if we had the resources, we could do much more. These motivate us to learn and be creative.

These are some of the lessons we have learned, and intend to us

The palliative care is one that focuses on aspect of the patient - holistic assessment and care. This is not to maintain when the team of providers is too small compared to the number of patients.

A plan is important for direction of / business. We learned to as a team while on the new plan 2020 – The plan who we are at HAU, what we do, what we should do and how we will measure ourselves. All the team members own it and are committed Figure 4: (L)Students and teachers of the Francophone Initiators course held in 2019 at HAU- Uganda. (R)): Sylvie Dive pre withinsenting the at palliative conferenc caree in Democratic will Rhelpepublic us advance of Congo the cause of palliative care. As HAU it matters to us that we serve as as we can and train as as we can however, we can reach a few. We participated in several opportunities in the past sharing with and from other hospices and palliative care providers and learned a lot.

We learned to work as a team Figure 5: (L): Prof. Dr. Anne and Dr Dorothy Olet are welcomed in Ouagadougou airport in Burkina Faso 1 while working on the new

Progress of Palliative Care in Africa Palliative care hasstrategic moved from only 3 countri planes in 1993 (South 2020 Africa, Zimbab w–e a n2025.d Kenya) to 37 countri es by end of June 2020, following the Hospice Africa vision. Alongside HAU’s International Programmes, the African Palliative Care Association also advocates with governments for a conducive environment for Palliative care.

15 19 18181818 HOSPICEHOSPICE AFRI AFRICACA U UGANDAGANDA l l Annual Annual R Reporteport l l 2 2019019 - - 2020 2020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 The Anglophone and Francophone courses for 2020 were postponed to the latter half of 2020 hoping the COVID19 pandemic will b7e cont.0rolled. Challenges and 4.0 The Institute Of Hospice IP team is developingRe anc onliommendationsne/ virtual learning section of the Initiators course which will likely reduce both And Palliative Care In Africa OtBetweenher IP engaged 2017 and tra v2019,els for HAU adv sufferedocacy an da teaching we reductionre postpo nined funding due to tandhe C ovid-19 restric ations. reduction The tr inav elsthe tocatchment the following radius countri fore alls; Ethiopithe threea, Mal sites,awi, reduction Senegal, Finra thence and Liberia of w ere put on home hold anduntil hospital the restri visitsctions a for travel are lifted. (IHPCA) operations led to a leaner that could be supported but a drop in the number of Palliative Care Education started alongside clinical o Postgraduate Diploma in Paediatric Palliative Care patients reached and the number of contacts. It is not to that the need for palliative care in Uganda is care in1993. The institute was recognized by National but rather that if we had the resources, we could do much more. These motivate us Council for Higher Education as a Tertiary Institution for o Postgraduate Diploma in Psychosocial and Spiritual to learn and be creative. Higher Learning in 2009. The IHPCA has been affiliated Palliative Care to Makerere University since 2003. The IHPCA was These are some of the lessons we have learned, and intend to us granted the Private Other Degree Awarding Institution 3.2 New Academic Programmes status in 2014. Its Research Ethics Committee is Two new Postgraduate Diploma Programmes were The palliative care is one that focuses on aspect of the patient - holistic assessment and accredited by Uganda National Council for Science and accredited by the NCHE in February 2019. These care. This is not to maintain when the team of providers is too small compared to the number of patients. Technology (UNCST). included;

During the year 2019/20, the Institute facilitated the o Postgraduate Diploma in Palliative Care Oncology A plan is important for direction of / business. We learned to as a fulfilment of HAU’s vision of palliative care reaching all team while on the new plan 2020 – The plan who we are at HAU, what in need in Africa, by continuing to deliver high quality o Postgraduate Diploma Pharmacotherapeutics in we do, what we should do and how we will measure ourselves. All the team members own it and are committed palliative care education to students and palliative palliative care care practitioners from Uganda and other African Figure 4: (L)Students and teachers of the Francophone Initiators course held in 2019 at HAU- Uganda. Countries. 26 of its students from 4 Sub Saharan The curriculum for Master’s in Palliative Care (R)): Sylvie Dive presenting at conference in Democratic Republic of Congo within the palliative care will help us advance the cause of palliative care. As African Countries graduated with Bachelor of Science Programme was approved by Makerere University HAU it matters to us that we serve as as we can and train as as we can however, we can reach degree from Makerere University, 29 graduated with council who forwarded it to NCHE for accreditation. a few. We participated in several opportunities in the past sharing with and from other hospices Diploma in Clinical Palliative Care and 7 graduated The NCHE had planned to make a physical Inspection and palliative care providers and learned a lot. Postgraduate Diplomas in Palliative Care of IHPCA. of the Institute to confirm that it has the necessary human and physical facilities to conduct a Master’s As with all Institutions the Institute faced the challenge programme. However, the inspection was aborted at of an increasing number of students being unable to the last moment when the lockdown due to Covid-19 pay full tuition fees. The other is the continued lack was announced in March 2020. The lock down of recognition of palliative care qualifications as a continues however 12 students have applied for this specialty by Ministry of Public Service in Uganda. programme for 2000/21 academic year.

3.1 Academic Programs During 2019/20 3.3 Students Enrolment We learned to work as a team Academic programmes offered included; We saw a significant drop in student enrolment due to Figure 5: (L): Prof. Dr. Anne and Dr Dorothy Olet are welcomed in Ouagadougou airport in Burkina Faso 1 changes in Makerere University admission policies. o Bachelor of Science -3 years by distance learning while working on the new (Awarded by Makerere University) 69 students were enrolled in academic programmes (56 BSc, 2 DPC, 2 DCPC and 9 Postgraduate Diplomas) Progress of Palliative Care in Africa o Diploma in Palliative Care -one year by distance Palliative care hasstrategic moved from only 3 countri planes in 1993 (South 2020 Africa, Zimbab w–e a n2025.d Kenya) to 37 countri es by learning (Awarded by Makerere University 9 students enrolled in the postgraduate diploma end of June 2020, following the Hospice Africa vision. Alongside HAU’s International Programmes, the African programmes, but two dropped out shortly because Palliative Care Association also advocates with governments for a conducive environment for Palliative care. o Diploma in Clinical Palliative Care - one year – of inability to pay fees. Of the current 67 students. 44 residential (Awarded by the Institute) (64%) are international students.

o Postgraduate Diploma in Clinical Palliative Care

15 16 19 1818 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 19 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 The IHPCA also supports two students pursuing their 3.8 Fees Payment Challenge PhD. One of them as an international graduate Fees collection/recovery from self-sponsored students remained a major challenge during 2019/20. Very few 3.4 Graduations self-sponsored students were able to pay the full tuition 26 students graduated with Bachelor of Science Degree fees. Overall only about 60% of the fees were paid and (8 from Kenya, 7 from Malawi, 1 from Rwanda and 10 most were from students who received scholarships or Ugandans in January 2020 from Makerere University. sponsorship from their employing Institutions

29 students graduated with Diploma in Clinical Palliative Care of IHPCA in February 2020, 27 Ugandans and two The number of academic staff remained unchanged at from Malawi. 9 including the Principal and Academic Registrar. They are supported by one Resource Centre manager and one 7 students graduated with the Postgraduate Diploma Administrative Assistant. in Palliative Care (2 Clinical PC, 2 Pediatrics PC and 3 Psychosocial and Spiritual Palliative Care). The Staff development Programmes graduates were 4 Ugandans, and 1 each from Germany, One team member who was on staff development programme obtained a Master’s Degree from Clarke graduate with the postgraduate diploma which was International University launched in 2017. One team member is on a fully funded PhD programme. The total number of graduates from the Institute since One team member was admitted to PhD programme in 2004 is 530 made up of BSc 107, DPC 202, DCPC 214 and UK, but was unable to take up the offer because of lack 7 Postgraduate Diplomas of funding.

3.5 Academic Programmes Under Development Two staff members are doing the postgraduate diploma A Master of Science programme in Medical Social Work at the Institute

A Masters programme in Medical Education 3.10 Hospice Africa Uganda Research Ethics Committee (HAUREC) meetings The Committee continued to receive and review Car research protocols from National and International researchers on behalf of the National Council for Science Online short courses in palliative care and Technology. They also conducted site monitoring visits to facilities where the research projects were 3.6 Non Academic Training (Short) Courses being conducted. See Appendix for details of protocols During 2019/20, the Institute conducted the following reviewed. short courses in Palliative care.

Health professionals training for Nurses from Apac Medical Centre (a private hospital 4 participants) and From Church of Uganda Bwindi Community Hospital (3 participants)

3.7 Scholarships secured for 2019/20 Academic year African Palliative Care Association offered 2 scholarships to students on BSC programme.

17 2020 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 The IHPCA also supports two students pursuing their 3.8 Fees Payment Challenge 5.0 HAU Publications And PhD. One of them as an international graduate Fees collection/recovery from self-sponsored students 5.0 HAU Publications And remained a major challenge during 2019/20. Very few 3.4 Graduations self-sponsored students were able to pay the full tuition Presentations 26 students graduated with Bachelor of Science Degree fees. Overall only about 60% of the fees were paid and Presentations (8 from Kenya, 7 from Malawi, 1 from Rwanda and 10 most were from students who received scholarships or In the year 2019/20, HAU team members attended and made presentations at two conferences. The 2nd Uganda Ugandans in January 2020 from Makerere University. sponsorship from their employing Institutions In theConference year 2019/20, on HAUCancer team and members Palliative attended Care took and place made from presentations 5th – 6th September at two conferences. 2019 at Kampala The 2nd Serena Uganda Hotel. ConferenceVarious onteam Cancer members and Palliative of HAU Careattended took theplace conference from 5th –and 6th fiveSeptember of them 2019 made at Kampala various Serenapresentations. Hotel. The 29 students graduated with Diploma in Clinical Palliative Varioustheme team of themembers conference of HAU was attended ‘Towards the Universal conference Coverage’. and five of them made various presentations. The theme of the conference was ‘Towards Universal Coverage’. Care of IHPCA in February 2020, 27 Ugandans and two The number of academic staff remained unchanged at from Malawi. 9 including the Principal and Academic Registrar. They The 6th International African Palliative Care Conference was also held from 17th to 20th Sept 2019 in Kigali The 6th International African Palliative Care Conference was also held from 17th to 20th Sept 2019 in Kigali are supported by one Resource Centre manager and one Rwanda and was attended by six HAU team members. Four of them made presentations. The conference theme Rwanda and was attended by six HAU team members. Four of them made presentations. The conference theme 7 students graduated with the Postgraduate Diploma Administrative Assistant. was ‘Palliative care and universal health coverage’. in Palliative Care (2 Clinical PC, 2 Pediatrics PC and was ‘Palliative care and universal health coverage’. 3 Psychosocial and Spiritual Palliative Care). The Staff development Programmes During the year, several HAU team members worked on concepts and research papers that were submitted to During the year, several HAU team members worked on concepts and research papers that were submitted to graduates were 4 Ugandans, and 1 each from Germany, One team member who was on staff development various journals for publication. The list of papers and presentations is in appendix two of this report. various journals for publication. The list of papers and presentations is in appendix two of this report. programme obtained a Master’s Degree from Clarke graduate with the postgraduate diploma which was International University launched in 2017. One team member is on a fully funded PhD programme. The total number of graduates from the Institute since One team member was admitted to PhD programme in 6.0 Brief Report On Other 2004 is 530 made up of BSc 107, DPC 202, DCPC 214 and UK, but was unable to take up the offer because of lack 6.0 Brief Report On Other 7 Postgraduate Diplomas of funding. HAUHau Activites 3.5 Academic Programmes Under Development Two staff members are doing the postgraduate diploma Hau Activites 6.1 Extra Ordinary Annual General meeting held Bank, Crown Beverages Ltd, Ecobank Uganda, ICEA A Master of Science programme in Medical Social Work at the Institute 6.1 Extra Ordinary Annual General meeting held Bank, Crown Beverages Ltd, Ecobank Uganda, ICEA for Selection of New board members. General Insurance, various Rotary Clubs in Uganda, for Selection of New board members. GeneralThe Insurance,Irish community various in Uganda,Rotary Clubs Joint inMedical Uganda, Stores, A Masters programme in Medical Education 3.10 Hospice Africa Uganda Research Ethics The Irish community in Uganda, Joint Medical Stores, This was held on 30th August 2019. HAU has over National Medical Stores, Mary hill Old Girls Association, Committee (HAUREC) meetings National Medical Stores, Mary hill Old Girls Association, This70 was members held on who 30th make August the AGM2019. and HAU these has approvedover Schools in Mbarara district, Mbarara Municipality, The Committee continued to receive and review Schools in Mbarara district, Mbarara Municipality, 70 membersthe appointment who make of the 13 AGMBoard and members these approved selected to Nile Breweries Car research protocols from National and International Nile Breweries the appointmentjoin the HAU Board,of 13 Board with representationmembers selected from toHoima Limited, researchers on behalf of the National Council for Science Limited, join theand HAUMbarara. Board, The with new representation board members from haveHoima since Centenary Online short courses in palliative care and Technology. They also conducted site monitoring Centenary and heldMbarara. various The meetings new board during members the year have to steersince HAU Bank Limited, visits to facilities where the research projects were held various meetings during the year to steer HAU Bank Limited, 3.6 Non Academic Training (Short) Courses strategically forward. Kazire Health being conducted. See Appendix for details of protocols strategically forward. Kaziredrinks, Health LMK During 2019/20, the Institute conducted the following reviewed. drinks,Consultance LMK short courses in Palliative care. 6.2 HAU Fundraising Events Consultance 6.2 HAUDuring Fundraising the year 2019/20, Events HAU held a grand reunion Ltd, My Life My During the year 2019/20, HAU held a grand reunion Ltd, healthMy Life Myclub, Health professionals training for Nurses from Apac and fundraising event at all the three sites. HKLA and fundraising event at all the three sites. HKLA healthC.O.U club,Ankole Medical Centre (a private hospital 4 participants) and held a dinner at Hotel Africana on 1st November 2019 held a dinner at Hotel Africana on 1st November 2019 C.O.UDiocese, Ankole Radio From Church of Uganda Bwindi Community Hospital (3 with representation from Ministry of Health, Palliative with representation from Ministry of Health, Palliative Diocese,Maria, Radio Mbarara participants) Care fraternity and corporate companies. MHM held Maria, Mbarara Carea fraternity charity walk and corporateand a dinner companies. in Mbarara MHM town. held LHH Catholic a charity walk and a dinner in Mbarara town. LHH Archdiocese, Century Bottling CatholicCompany, endigito 3.7 Scholarships secured for 2019/20 Academic held a fundraising ceremony. It was most exciting to held a fundraising ceremony. It was most exciting to Archdiocese,radio, crooze Century fm, BottlingTV West, Company, radio west, endigito Bunyoro year see alumni meet the current team at HAU. The eventradio, crooze fm, TV West, radio west, Bunyoro see alumnialso doubled meet theas acurrent fundraiser team which at HAU. brought The event on board Kingdom leadership, patients and several individuals African Palliative Care Association offered 2 scholarships also doubled as a fundraiser which brought on board Kingdomboth leadership,members and patients well-wishers and several of HAU. individuals to students on BSC programme. several corporate companies. Special appreciationboth members and well-wishers of HAU. severalgoes corporate to; Nation companies. Media Group, Special Standard appreciation Chartered goes to; Nation Media Group, Standard Chartered

17 18 18 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 21 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 Finance

26 2222 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 Finance

26 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 23 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 2424 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 25 2626 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 27 2828 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 7.0 Challenges and Recommendations Between 2017 and 2019, HAU suffered a signiﬁcant reduction in funding and consequently a reduction in the catchment radius for all the three sites, reduction in the frequency of daycare, home and hospital visits a restructuring process that cut down the number of staff. The HAU previous strategic plan had expired in 2017. Reduced operations led to a leaner budget that could be supported but a steady drop in the number of patients reached and the number of contacts. It is not to say that the need for palliative care in Uganda is insigniﬁcant but rather that if we had the resources, we could do much more. These challenges motivate us to learn and be creative.

These are some of the lessons we have learned, and intend to use in the next year.

1. The palliative care specialty is one that focuses on every aspect of the patient - holistic assessment and care. This is not easy to maintain when the team of providers is too small compared to the number of patients. Therefore, we should value each other knowing that we are each working very hard.

2. A strategic plan is important for strategic direction of any organisation / business. We learned to work as a team while working on the new strategic plan 2020 – 2025. The plan clearly deﬁnes who we are at HAU, what we do, what we should do and how we will measure ourselves. All the team members own it and are committed to delivering on this plan.

3. Working together within the palliative care fraternity will help us advance the cause of palliative care. As HAU it matters to us that we serve as many as we can and train as many as we can however, we can only reach a few. We participated in several opportunities in the past year, sharing with and learning from other hospices and palliative care providers and learned a lot.

We learned to work as a team while working on the new strategic plan 2020 – 2025.

19 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 29 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 8.0 List of team members 1st july 2019-30th june 2020 NAME DESIGNATION

1 Dr. Agsha Doreen Birungi Chief Executive Director 2 Caroline Violet Alony Finance Manager 3 Dr. Eddie Mwebesa Clinical & International Programmes Director from Jan. 2020 4 Prossy Nakyanja Human Resource & Administration Manager 5 Prof. Stanley Wilson Acuda Principal - IHPCA 6 Berna Basemera Anglophone Nurse trainer/Administrator till Dec. 2019 7 Sylvia Dive Francophone PC Nurse 8 Diana Basirika Francophone PC Nurse 9 Maureen Namale PA to Founder & International Programmes Administrator 10 Roselight Katusabe Health Services Coordinator 11 Josephine Nabitaka PC Nurse 12 Resty Nakanwangi PC Nurse 13 Jane Mwesige PC Nurse 14 Aciro Dorcus Social Worker 15 Susan Nakibirango Administrative Assistant 16 Chistine Lisa Irumba Clinical Officer 17 Sarah Nakyanzi Dispenser 18 Dr Dorothy Adong Olet Lecturer/Academic Programmes Coordinator 19 Dr Margaret Tumwebaze Quality Assurance Registrar 20 Nasur Buyinza Academic Registrar/Lecturer 21 Rachael Dipio Lecturer 22 Berna Mandera Associate Lecturer 23 Harriet Nakiganda Lecturer 24 Janepher Nyakake Lecturer 25 Emmanuel Luyombya Resource Centre Manager 26 Karima Amin Kamru Pharmacist 27 Monica Nanono Quality Assurance Officer 28 Akowa Charles Quality Assurance Assistant 29 Sarah Nakachwa Bwambale Accountant 30 Alice Namuleme Accountant 31 Grace Namwanje Accounts Assistant upto Jan 2020 32 Douglas Muhairwe Accounts Assistant 33 Joan Namata Administrative Assistant 34 Nelson Gumoyesiga Systems Administrator 35 Rosemary Abaru Administrative Assistant

20 3030 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 36 Grace Wamala Akiiki Grants Manager 8.0 List of team members 1st 37 Godfrey Aliowuka Security Guard 38 Ronald Wetese Maganda Security Guard july 2019-30th june 2020 39 Joseph Maanyi Maintenace Assistant/Security Guard 40 Cate Nababi General Assistant NAME DESIGNATION 41 Vicky Amazo General Assistant 42 Siragi Kazibwe Head Driver

43 Robert Kyomuhendo Driver 1 Dr. Agsha Doreen Birungi Chief Executive Director

2 Caroline Violet Alony Finance Manager 3 Dr. Eddie Mwebesa Clinical & International Programmes Director from Jan. 2020 LITTLE HOSPICE HOIMA LITTLE HOSPICE HOIMA 4 Prossy Nakyanja Human Resource & Administration Manager 44 Octivia Nazziwa Health Services Coordinator- Little Hospice Hoima 5 Prof. Stanley Wilson Acuda Principal - IHPCA 45 Hanifa Nakanwangi PC Nurse 6 Berna Basemera Anglophone Nurse trainer/Administrator till Dec. 2019 46 Jane Nakibuuka PC Nurse 7 Sylvia Dive Francophone PC Nurse 47 Sarah Kitalikyawe PC Nurse 8 Diana Basirika Francophone PC Nurse 48 Rashida Nalule PC Nurse 9 Maureen Namale PA to Founder & International Programmes Administrator 49 Elizabeth Namugambe Social Worker/Data Clerk 10 Roselight Katusabe Health Services Coordinator 50 James Kivumbi Security Guard 11 Josephine Nabitaka PC Nurse 51 Armstrong Mugisa Security Guard 12 Resty Nakanwangi PC Nurse 52 Saudah Kabajungu Caterer 13 Jane Mwesige PC Nurse 53 Amos Sunday General Assistant 14 Aciro Dorcus Social Worker 54 Ajuna Christopher Driver 15 Susan Nakibirango Administrative Assistant 16 Chistine Lisa Irumba Clinical Officer

17 Sarah Nakyanzi Dispenser MOBILE HOSPICE MBARARA MOBILE HOSPICE MBARARA 18 Dr Dorothy Adong Olet Lecturer/Academic Programmes Coordinator 55 Antonia KamateTukundane Site Manager - Mobile Hospice Mbarara 19 Dr Margaret Tumwebaze Quality Assurance Registrar 56 Martha Rabwoni Health Services Coordinator- Mobile Hospice Mbarara 20 Nasur Buyinza Academic Registrar/Lecturer 57 Beatrice Asiimwe PC Nurse 21 Rachael Dipio Lecturer 58 Betty Bifabusa PC Nurse 22 Berna Mandera Associate Lecturer 59 Elizabeth Mbabazi Clinical Officer 23 Harriet Nakiganda Lecturer 60 Francisca Nagujja PC Nurse 24 Janepher Nyakake Lecturer 61 Harriet Nalubega PC Nurse 25 Emmanuel Luyombya Resource Centre Manager 62 Miriel Kabigarire PC Nurse 26 Karima Amin Kamru Pharmacist 63 Sharlottie Nahabwe Administrative Assistant 27 Monica Nanono Quality Assurance Officer 64 John Kobweme Security Guard 28 Akowa Charles Quality Assurance Assistant 65 Vicent Mubangizi Security Guard 29 Sarah Nakachwa Bwambale Accountant 66 Lawrence Tumwesigye General Assistant 30 Alice Namuleme Accountant 67 Glorious Nabumwine Caterer 31 Grace Namwanje Accounts Assistant upto Jan 2020 68 Michael Asiimwe Driver 32 Douglas Muhairwe Accounts Assistant 69 Shafiq Bamudaga Wasswa Driver 33 Joan Namata Administrative Assistant 34 Nelson Gumoyesiga Systems Administrator 35 Rosemary Abaru Administrative Assistant

20 21 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 31 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 Appendix 1 – Protocols Appendix 2: and T able showingChallenges 0 . on-7 Reviewed by the HAUREC going research, Publicationsommendations c e R 1. Description of current state of palliative care the in andreduction a conconsequently feand renfunding in cereduction presignificant a s entationssuffered HAU 2019, and 2017 Between services in Uganda (PCAU and University of Notre 11. Exploring the experiences of adult patients a visits hospital and home daycare, of frequency the in reduction sites, three the all for radius catchment Dame USA) using oral liquid Morphine (Michael Ekwang, student) Hospice Author Title of paper, presentation or poster Place of publication, presentation U previous strategic plan had expired in 2017. in expired had plan strategic previous U HA The staff. of number the down acut n d dathat te process restructuring 12. Factors influencing the health seeking of number the in drop steady a but supported be could that budget leaner a to led operations Reduced 2. Assessing the prophylactic activity, safety and behaviour among HIV/AIDS clients towards palliative Publicationsis Uganda in care palliative for need the that say to not is It contacts. of number the and reached patients economic impact of ARTAVOL against Malaria burden care services at Hospice Africa Uganda by Nakalema us motivate challenges These more. much do could we resources, the had we if ecancerthat 2019rather Availablebut at insignificant at household levels in Apac District in Uganda (Prof Prossy Prof. Dr. Anne Merriman, Improving access to palliative care for https://europepmc.org/backend/ Dr. Eddie Mwebesa, Dr. Zirimenya creative. be and learn to Everd Maniple et al) patients with cancer in Africa: 25 years of ptpmcrender.fcgi?accid=P- Ludoviko Hospice Africa. MC6722241&blobtype=pdf 13. Organisational determinants of patient year. next the in e us to intend and learned, have we lessons the of some are These 3. Preparedness to face the Covid-19 pandemic in satisfaction among cancer patients: a case of Hospice Prof. Dr. Anne Merriman Hope for the Hopeless P 12, Catholic Pic, Issue, May 2020 African Hospitals and Palliative Care Services: A Rapid Africa Uganda: (Dr Dorothy Adong Olet- a Masters in and assessment holistic - patient the of aspect every on focuses that one is specialty care palliative The 1. Assessment (African Palliative Care Association and Management studies UMI) patients. Prof. Dr. Annepatients. of Merrimannumber the to compared An Africansmall too Journeyis providers of team the when Triplemaintain Helixto oneasy line,not CMF,is This May 2020care. Kings College London) hard. very working each are we that knowing other https://cmf.li/2z9Fs3Leach value should we Therefore, 14. Effect of cancer illness and treatment on the 4. Exploring the perceptions of cancer patients on Psychosocial well- being of caretakers by Renzi Joyce Submitteda as work forto publiclearned a tionWe business. / organisation any of direction strategic for important is plan strategic A 2. use of oral Morphine for management of pain at Joy Didi (Uganda Cancer Institute) what HAU, at are we who defines clearly plan The 2025. – 2020 plan strategic new the on working while team Hospice, Mbale: (Dennis Wonasolo, Student) Barbara Duncan and Wilson Acuda Understanding the management of patients Submitted to: Palliative Medicine committed committed are and it own members team the All ourselves. measure will we how and do should we what do, we 15. Project sustainability: the case of Hospice Africa with non-malignant pain in palliative care Journal to delivering on this plan. this on delivering to 5. Do they also suffer from cancer or they are Uganda by Victoria Aguti, Makerere University setting in Kampala immune against it: a phenomenological study of lived Business School As As care. palliative of cause the advance us help will fraternity care palliative the within together Working 3. experiences of cancer Heath Profession survivors in Racheal Dipio, Wilson Acuda, Eve Prevalence and factors associated with Accepted in press (Supportive and reach Namisangreach oonly , Macan r y Mwe b oowa (2020)however, can we depas ressionmany as a mongtrain familyand cacan rewe givas ers of many as serve Palli we ativethat Caus re)to matters it HAU Uganda? By Germans N, Peter Ellis, Wilson Acuda et al) 16. Prevalence, risk factors and management of hospices hospices other from learning and pawith tients atsharing t endingyear, Hospipast cethe Ain frica Uganda opportunities several in participated We few. a Neuropathic Pain in cancer patients attending palliative care service in Ugan da.lot. Supa portivelearned and providers care palliative and 6. A Nurse-Led integrated palliative care for Multi palliative care service at a tertiary palliative care and Palliative Care drug Resistant Tuberculosis in Uganda: a randomised service in Uganda. (Lisa Irumba (Master’s Degree clinical trial: Nasur Buyinza (PhD project) project) Buyinza N, Ryan C, Adong Olet D, Okello Understanding the needs, challenges and East African Health Research L and Acuda SW (2020): opportunities of integrating palliative Journal (Accepted –press) 7. Cancer occurrences and risk patterns in Uganda: 17. An assessment of needs and lived experiences of care services into humanitarian health a comparative assessment among 4 Geographical Refugees requiring palliative care and their care givers interventions among health care workers Regions in Uganda: Annette Nakiganda, Uganda in Uganda: a mixed method study (Peace Bagasha, serving refugee Communities in Uganda Cancer Institute (PhD) Mhoira Leng and Prof Julia Downing) Dorothy Adong Olet, Aida Lubwama, Organisational determinants and patient Submitted to e-cancer Martha Olweny and Wilson Acuda: satisfaction among cancer patients: a case of 8. An exploration of the need for Nursing and Midwifery 18. Exploring the psychosocial needs of elderly patients We learned to work as a team team a Hospias ce Africa Ugandawork to learned We Leadership Capacity Building in Uganda: Prof Julia with cancer receiving palliative care at Hospice Africa Downing and University of South Wales, UK Uganda – Josephine Nabitaka Adong Olet Dorothy Expectations and level of satisfaction among Master Degree in Management while working on the new new patientsthe receivingon palliative care at Hospiceworking while 9. Challenges to seeking palliative care services among 19. Experiences of women aged 18 to 49 years of Africa Uganda. Management Institute) terminally ill cancer patients in Makindye Division age seeking cervical cancer screening: a case of 2025. – 2020 plan strategic Kampala: By Nasasira Sheibah, Kyambogo University Gynaecology clinic at Mulago National Referrals Papers in preparation Hospital, Kampala 10. The extent to which advanced care planning is Roselight Katusabe, Margaret Tusiime Experiences of cervical cancer patients on practiced by palliative care health professionals 20. Understanding the Health Workers perceptions Tumwebaze, Eve Namisango and Road to Care Programme at Hospice Africa providing palliative care to patients with advanced towards Morphine use among patients with Sickle Cell Wilson Acuda Uganda in relation to chemo-radiation cancer and their families in Uganda (Dr Sam Gumo, Disease at Joy Hospice Mbale – Kawubiri Wilberforce Kawempe Home Care) 22 19 3232 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 33 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 19/20 0 2 REPORT AL U N N A l A D N A G U A C AFRI HOSPICE Appendix 1 – Protocols Appendix 2: and T able showingChallenges 0 . on-7 Reviewed by the HAUREC going research, Publicationsommendations c e R 1. Description of current state of palliative care the in andreduction a conconsequently feand renfunding in cereduction presignificant a s entationssuffered HAU 2019, and 2017 Between services in Uganda (PCAU and University of Notre 11. Exploring the experiences of adult patients a visits hospital and home daycare, of frequency the in reduction sites, three the all for radius catchment Dame USA) using oral liquid Morphine (Michael Ekwang, student) Hospice Author Title of paper, presentation or poster Place of publication, presentation U previous strategic plan had expired in 2017. in expired had plan strategic previous U HA The staff. of number the down acut n d dathat te process restructuring 12. Factors influencing the health seeking of number the in drop steady a but supported be could that budget leaner a to led operations Reduced 2. Assessing the prophylactic activity, safety and behaviour among HIV/AIDS clients towards palliative Publicationsis Uganda in care palliative for need the that say to not is It contacts. of number the and reached patients economic impact of ARTAVOL against Malaria burden care services at Hospice Africa Uganda by Nakalema us motivate challenges These more. much do could we resources, the had we if ecancerthat 2019rather Availablebut at insignificant at household levels in Apac District in Uganda (Prof Prossy Prof. Dr. Anne Merriman, Improving access to palliative care for https://europepmc.org/backend/ Dr. Eddie Mwebesa, Dr. Zirimenya creative. be and learn to Everd Maniple et al) patients with cancer in Africa: 25 years of ptpmcrender.fcgi?accid=P- Ludoviko Hospice Africa. MC6722241&blobtype=pdf 13. Organisational determinants of patient year. next the in e us to intend and learned, have we lessons the of some are These 3. Preparedness to face the Covid-19 pandemic in satisfaction among cancer patients: a case of Hospice Prof. Dr. Anne Merriman Hope for the Hopeless P 12, Catholic Pic, Issue, May 2020 African Hospitals and Palliative Care Services: A Rapid Africa Uganda: (Dr Dorothy Adong Olet- a Masters in and assessment holistic - patient the of aspect every on focuses that one is specialty care palliative The 1. Assessment (African Palliative Care Association and Management studies UMI) patients. Prof. Dr. Annepatients. of Merrimannumber the to compared An Africansmall too Journeyis providers of team the when Triplemaintain Helixto oneasy line,not CMF,is This May 2020care. Kings College London) hard. very working each are we that knowing other https://cmf.li/2z9Fs3Leach value should we Therefore, 14. Effect of cancer illness and treatment on the 4. Exploring the perceptions of cancer patients on Psychosocial well- being of caretakers by Renzi Joyce Submitteda as work forto publiclearned a tionWe business. / organisation any of direction strategic for important is plan strategic A 2. use of oral Morphine for management of pain at Joy Didi (Uganda Cancer Institute) what HAU, at are we who defines clearly plan The 2025. – 2020 plan strategic new the on working while team Hospice, Mbale: (Dennis Wonasolo, Student) Barbara Duncan and Wilson Acuda Understanding the management of patients Submitted to: Palliative Medicine committed committed are and it own members team the All ourselves. measure will we how and do should we what do, we 15. Project sustainability: the case of Hospice Africa with non-malignant pain in palliative care Journal to delivering on this plan. this on delivering to 5. Do they also suffer from cancer or they are Uganda by Victoria Aguti, Makerere University setting in Kampala immune against it: a phenomenological study of lived Business School As As care. palliative of cause the advance us help will fraternity care palliative the within together Working 3. experiences of cancer Heath Profession survivors in Racheal Dipio, Wilson Acuda, Eve Prevalence and factors associated with Accepted in press (Supportive and reach Namisangreach oonly , Macan r y Mwe b oowa (2020)however, can we depas ressionmany as a mongtrain familyand cacan rewe givas ers of many as serve Palli we ativethat Caus re)to matters it HAU Uganda? By Germans N, Peter Ellis, Wilson Acuda et al) 16. Prevalence, risk factors and management of hospices hospices other from learning and pawith tients atsharing t endingyear, Hospipast cethe Ain frica Uganda opportunities several in participated We few. a Neuropathic Pain in cancer patients attending palliative care service in Ugan da.lot. Supa portivelearned and providers care palliative and 6. A Nurse-Led integrated palliative care for Multi palliative care service at a tertiary palliative care and Palliative Care drug Resistant Tuberculosis in Uganda: a randomised service in Uganda. (Lisa Irumba (Master’s Degree clinical trial: Nasur Buyinza (PhD project) project) Buyinza N, Ryan C, Adong Olet D, Okello Understanding the needs, challenges and East African Health Research L and Acuda SW (2020): opportunities of integrating palliative Journal (Accepted –press) 7. Cancer occurrences and risk patterns in Uganda: 17. An assessment of needs and lived experiences of care services into humanitarian health a comparative assessment among 4 Geographical Refugees requiring palliative care and their care givers interventions among health care workers Regions in Uganda: Annette Nakiganda, Uganda in Uganda: a mixed method study (Peace Bagasha, serving refugee Communities in Uganda Cancer Institute (PhD) Mhoira Leng and Prof Julia Downing) Dorothy Adong Olet, Aida Lubwama, Organisational determinants and patient Submitted to e-cancer Martha Olweny and Wilson Acuda: satisfaction among cancer patients: a case of 8. An exploration of the need for Nursing and Midwifery 18. Exploring the psychosocial needs of elderly patients We learned to work as a team team a Hospias ce Africa Ugandawork to learned We Leadership Capacity Building in Uganda: Prof Julia with cancer receiving palliative care at Hospice Africa Downing and University of South Wales, UK Uganda – Josephine Nabitaka Adong Olet Dorothy Expectations and level of satisfaction among Master Degree in Management while working on the new new patientsthe receivingon palliative care at Hospiceworking while 9. Challenges to seeking palliative care services among 19. Experiences of women aged 18 to 49 years of Africa Uganda. Management Institute) terminally ill cancer patients in Makindye Division age seeking cervical cancer screening: a case of 2025. – 2020 plan strategic Kampala: By Nasasira Sheibah, Kyambogo University Gynaecology clinic at Mulago National Referrals Papers in preparation Hospital, Kampala 10. The extent to which advanced care planning is Roselight Katusabe, Margaret Tusiime Experiences of cervical cancer patients on practiced by palliative care health professionals 20. Understanding the Health Workers perceptions Tumwebaze, Eve Namisango and Road to Care Programme at Hospice Africa providing palliative care to patients with advanced towards Morphine use among patients with Sickle Cell Wilson Acuda Uganda in relation to chemo-radiation cancer and their families in Uganda (Dr Sam Gumo, Disease at Joy Hospice Mbale – Kawubiri Wilberforce Kawempe Home Care) 22 19 HOSPICEHOSPICE AFRI AFRICACA U UGANDAGANDA l l Annual Annual R Reporteport l l 2 2019019 - - 2020 2020 3333 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 19/20 0 2 REPORT AL U N N A l A D N A G U A C AFRI HOSPICE 7.0 Challenges and Amandua J, Kashaba DM, Orach S, Assessment of palliative care services in Acuda SW, et al Catholic Health care facilities and Training RecommendationsInstitutions in Uganda GermansBetween Na tu2017hwe andra, Ma 2019,rtha RaHAUbw oni,suffered Clinician a s’ and Nurs es’ document in afundingtion and Submitted pee ar -reviewed r inevised the Peter Ellis and Pradiusrof An nfore. all the threep sites,ractice s in palliati vine athend hospice car e:of a manuscripts and t o International visits a mixed methods study providing evidence for operations led to a leanerquality impr othatvem ent at MHM supported a drop in the of patients and the of It is not to that the need for palliative in Uganda is Germans Natuhw era ,rather Peter Ellis,that ifan wed Ahaddva thenced Incurable C weervical Can docer: a Submit ted peer-revi ewed revised us Prof. Wilson Acuda descriptive qualitative study of women’s lived manuscripts to International narratives

Research in Progress palliative is one that on of the patient - and Nasur B uyinza is e nott al to whenA Nu rthese-led int egofra providersted pallia tiisv etoo ca re for Res etoar thech g rant from of B uildpatients. Care Multidrug Resistant Tuberculosis Therapy in Africa, Kings College, London (PhD Uganda: a randomized controlled trial

Con2. fAe rence pre sentplana istions for of organisation / We learned to as a on the new plan 2020 – 2025. plan we are at HAU, what Barbawe do,ra D whatuncan we an d Wilson do Acuda and weUnde rsta nding the ourselves. management theof p atients Presen ted it a andt the are 2nd Uganda with non-malignant pain in palliative care Conference on Cancer and setting in Kampala Palliative Care 3. within the palliative us the of palliative As AgashaHAU it D B, Tukun daton use A, that Nam wewanga serve asImp roving as ac weces s to andPalli atraintive ca asr e through as we Pre sented at wethe APC A con ference R ae t al We in several opportunitiesstrengthening in c ommunitthe pasty -based sharing surveilla withnce andin learning Kigali Rw anda Nasur Buyinza Challenges and Opportunities for integrating Presented at the APCA conference palliative care into humanitarian health in Kigali Rwanda interventions among health care workers in Uganda

Mirembe Anna Resty, Agasha D. Increasing demand and access to palliative Presented at the APCA conference Birungi, Ntege Christopher care in Kigali Rwanda

Dianah Basirika, Anne Merriman, Empowering other African countries to initiate Presented at the APCA conference Sylvia Dive, BernaWe Base mlearnedera and/or integ rtoate African work palliative care in asto ina Kigali team Rwanda their healthcare systems

while workingAdvanced Incurable Cervical Conancer: a thePre sennewted at the 2 nd UCI-PCAU Germans Natuhwera and Peter Ellis, descriptive qualitative study of women’s lived UK narratives, study at MHM palliative care, held at Kampala strategic plan 2020 – Se2025.rena Hotel, on 5th – 16th September 2019 and at the APCA conference in Kigali Rwanda

24 19 34343434 HOSPICEHOSPICE AFRICAAFRICA UGANDAUGANDA ll AnnualAnnual ReportReport ll 20192019 -- 20202020 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 7.0 Challenges and Funding Appeal Amandua J, Kashaba DM, Orach S, Assessment of palliative care services in Acuda SW, et al Catholic Health care facilities and Training RecommendationsInstitutions in Uganda OPERATIONAL COSTS € £ $ Costs in UGX 1 Euro = 4,000 1 GBP = 4,776 1 USD = 3,650 GermansBetween Na tu2017hwe andra, Ma 2019,rtha RaHAUbw oni,suffered Clinician a s’ and Nurs es’ document in afundingtion and Submitted pee ar -reviewed r inevised the Peter Ellis and Pradiusrof An nfore. all the threep sites,ractice s in palliati vine athend hospice car e:of a manuscripts and t o International visits a mixed methods study providing evidence for Cost for caring for one patient per month 89,724 20 19 25 operations led to a leanerquality impr othatvem ent at MHM supported a drop in the of patients and the of It is not to that the need for palliative in Uganda is Fuel per month for home visits and Germans Natuhwera, Peter Ellis, and Advanced Incurable Cervical Cancer: a Submitted peer-reviewed revised rather that if we had the we do us daycare patients’ transportation 863,862 216 181 237 Prof. Wilson Acuda descriptive qualitative study of women’s lived manuscripts to International narratives Maintenance cost for a car per quarter (average) 267,581 67 56 73 Research in Progress palliative is one that on of the patient - and Cost for maintaining and training of 4,276,250 1,069 895 1,172 Nasur B uyinza is e nott al to whenA Nu rthese-led int egofra providersted pallia tiisv etoo ca re for Res etoar thech g rant from of B uildpatients. Care 30 Community Volunteers for 6 Months Multidrug Resistant Tuberculosis Therapy in Africa, Kings College, London (PhD Uganda: a randomized controlled trial Bachelors in Palliative care annual tuition 5,475,000 1,369 1,146 1,500 Con2. fAe rence pre sentplana istions for of organisation / We learned to as a on the new plan 2020 – 2025. plan we are at HAU, what Barbawe do,ra D whatuncan we an d Wilson do Acuda and weUnde rsta nding the ourselves. management theof p atients Presen ted it a andt the are 2nd Uganda Short course costs per person for 7 days: 420,000 105 88 115 with non-malignant pain in palliative care Conference on Cancer and setting in Kampala Palliative Care 3. within the palliative us the of palliative As AgashaHAU it D B, Tukun daton use A, that Nam wewanga serve asImp roving as ac weces s to andPalli atraintive ca asr e through as we Pre sented at wethe APC A con ference R ae t al We in several opportunitiesstrengthening in c ommunitthe pasty -based sharing surveilla withnce andin learning Kigali Rw anda Nasur Buyinza Challenges and Opportunities for integrating Presented at the APCA conference Acknowledgement And palliative care into humanitarian health in Kigali Rwanda interventions among health care workers in Appreciation Uganda We thank Government of Uganda, the Ministry of the support of the Irish community in Uganda, The Health and the National COVID-19 task force. We Irish Embassy, Hospice Africa Ireland, Hospice Mirembe Anna Resty, Agasha D. Increasing demand and access to palliative Presented at the APCA conference Birungi, Ntege Christopher care in Kigali Rwanda appreciate National Medical Stores, Joint Medical Africa UK, Hospice Africa France, Hospice Africa Stores, Nile Breweries Limited, Centenary Bank USA, Friends of Hospice Africa Australia and the Limited, Kazire Health drinks, LMK Consultance Give a Chance UK, USA, France, Denmark, Friends Dianah Basirika, Anne Merriman, Empowering other African countries to initiate Presented at the APCA conference Ltd, My Life My health club, C.O.U Ankole Diocese, in Germany, Road to Care, Phil Molony, Alf Skolik, Sylvia Dive, BernaWe Base mlearnedera and/or integ rtoate African work palliative care in asto ina Kigali team Rwanda Radio Maria, Mbarara Catholic Archdiocese, Dr. B. Duncan, HAU members, The Rutamwebwa their healthcare systems Century Bottling Company, Mary hill Old Girls Family, Family of Madam Scholar Tugumisirize, while workingAdvanced Incurable Cervical Conancer: a thePre sennewted at the 2 nd UCI-PCAU Association, Schools in Mbarara district, Mbarara Friends of Dr. Anne and the many Ugandans who Germans Natuhwera and Peter Ellis, descriptive qualitative study of women’s lived Municipality, endigito radio, crooze fm, TV West, have stood by us every month throughout the year. UK narratives, study at MHM palliative care, held at Kampala radio west and Bunyoro Kingdom leadership. We We thank Anthony Conlin who did a great job of strategic plan 2020 – Se2025.rena Hotel, on 5th – 16th are also grateful to Nation Media Group, Standard harmonising the Hospice Africa (HA) brand working September 2019 and at the APCA Chartered Bank, Crown Beverages Ltd, Ecobank with the whole HA family for proper representation. conference in Kigali Rwanda Uganda, ICEA General Insurance, Stanbic Bank We appreciate all places that have received our Uganda, Phaneroo Ministries International, Turner donation boxes and all that have given in the boxes. and Townsend, Palliative Care Association of Lastly, we commend the board of Hospice Africa Uganda (PCAU), Coffee At Last, Janzi band and Uganda for the work they have done throughout various Rotary Clubs in Uganda. We acknowledge this year to keep HAU in service. 24 25 19 3434 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020 35 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 HOSPICE AFRICA UGANDA l ANNUAL REPORT 2019/20 Hospice Africa Uganda

Hospice Africa Ireland [email protected] Hospice Africa Uganda Hospice Africa France P.O. Box 7757, Kampala - Uganda Tel.: +33 (0) 6.32.70.62.98 Tel: +256 392 766867 and +256 701 968098 [email protected] Email: [email protected] Website: www.hospice-africa.org Hospice Africa UK Tel.: 01695 581318 Mobile Hospice Mbarara [email protected] Tel:+256 772 384938 and +256 705 161125 Hospice Africa USA Tel: 1-802-457-3994 Little Hospice Hoima Email: [email protected] Tel: +256 700 457971 and +256 772 890216 Anne Merriman Foundation

Friends of Hospice Africa Australia [email protected]

3636 HOSPICE AFRICA UGANDA l Annual Report l 2019 - 2020