We are delighted to share with you our second report this year, we thank all our supporters from Uganda and around the globe. The year is progressing well with our services including patient care for patients and families, teaching other professionals and hosting colleagues from other institutions and countries for placements and sharing our research. The country has now embraced COVID-19 as the team continues to protect itself and the patients by using masks and social distancing.
Please enjoy reading our updates for this period of April to June 2023 below.
Patient care
Patient and family care remain the centre of our service, the medical team alongside our volunteers have cared for 121 patients both on the Mulago and Kiruddu hospital sites, with 1,163 physical reviews and 902 telephone calls to provide ongoing support after discharge or bereavement to the grieving families.
We are grateful for your continued support towards, masks, sanitizers, food and nutrition support, soap and some medicines and investigations to the patients which make a difference in the quality of their lives while in hospital.
Please see below for charts on the patient demographics from April to June 2023.
Jackie’s story, as told to and written by Teddy
“Diagnosing me with advanced lung disease has been the worst experience in my life.” Teddy, one of our social worker volunteers in Kiruddu Hospital shares this from a patient named Jackie* who has been hospitalised for more than two years and is now oxygen dependent. Jackie is 27 years old, comes from Western Uganda and has an eight-year-old daughter (in school, thanks to sponsorship from a teacher) as well as her sister who takes care of her.
She narrated her story about the day she was diagnosed with lung disease. She says this affected her badly and she remembered episodes of panic attacks as well as depression. She counted herself as a goner – a lost cause – and did not have any desire to stay alive.
However, after Jackie was introduced to our palliative care team, she reports feeling more “at home” at the hospital and less depressed. She even said that she has no worries at all: “I have got a special team to help me and to check on me on a daily basis … it’s to the extent of that I even forget that I am an orphan.”
Jackie says that she prays that God will strengthen and reward the palliative care team. She also prays and wishes that all the other patients on her ward could be cared for by palliative care team, because, as Teddy explained, she sees that the other patients are missing out on a lot. In addition to regular visits and reviews for pain and symptom control, the team brings her a more concentrated form of oral morphine, which is not always available in the hospital.
Teddy, pictured below, shares that Jackie’s response and prayers encourages her to continue serving with our palliative care unit. And we thank Teddy—and the rest of the team in both Kiruddu and Mulago Hospitals—for their continued efforts in administration, clinical and social work, education, administration, and advocacy to promote palliative care for all.
*Jackie is not the real name of the patient; name changed for privacy reasons.
Educational activities
Our experienced team has continued to train and mentor other health care workers from within the county and outside, from clinical clerkships with postgraduate doctors through our partner Makerere University. Our mission is to promote excellent and accessible palliative care services for all. We continue to train both on the ward (clinical, hands-on practice) and through presentations and organised training sessions.
In the last three months, we have trained and mentored the following categories of professionals;
We are also providing ongoing mentorship and support for 16 trainees on the Uganda Children’s Palliative Care Nurses Leadership Fellowship Programme (UCPCNLFP) that we are currently running in conjunction with the International Children’s Palliative Care Network (ICPCN) and University of Edinburgh with funding from the Burdett Trust for Nursing.
On the 13th September we will be holding a Pre-conference workshop as part of the 4th Uganda Conference on Cancer care for the 16 participants.
Research and Conference activities
We have had 5 abstracts from our work accepted for presentation at the 4th Uganda Conference on Cancer and Palliative Care conference, due to take place 14th-15th September in Kampala - the team is very much looking forward to being part of this conference.
The abstracts include;
We look forward to sharing at this conference. Please look out for highlights from the conference in our next updates report.
Fundraising activities
We continue to put in place strategies to raise funds in support of our activities and have recently partnered with a Charity Organisation “The laughing tribe” who support charities through comedy and so we will work with them for any fundraising initiatives that they may have locally.
We hope you have enjoyed our update! If you have any questions or feedback, please do email us at info.pcerc@gmail.com and we will be very pleased to engage with you.
Best wishes from the PcERC team.
This being our very first report in the new year, we wish to say a happy new year to all our supporters from Uganda and around the globe. The year is progressing well with our services including patient care for patients and families, teaching other professionals and hosting colleagues from other institutions and countries for placements and sharing our research. The country has now embraced COVID-19 as the team continues to protect itself and the patients by using masks. We have also now survived the Ebola outbreak and the country is now declared free from the epidemic. We hope you enjoy reading our updates from the last months (January to March) below.
Patient care
Patient and family care remain the centre of our service, the medical team alongside our volunteers have cared for 108 patients both on the Mulago and Kiruddu hospital sites, with 856 physical reviews and 581 telephone calls to provide ongoing support after discharge or bereavement to the grieving families.
We are grateful for the continued support towards, masks, sanitizers, food and nutrition support, soap and some medicines to the patients which make a difference in the quality of their lives while in hospital.
Patient story: Life after COVID-19, as told to the palliative care team (written by the patient).
I am a female Ugandan, 33 years old, and you can call me “P.” My health issues began in 2017 as a severe cough, while I was working overseas as a housekeeper in Dubai. I was treated for tuberculosis (TB), but I never fully recovered. Finally, in 2020, the Mulago Lung Institute found that I have COVID Stage IV, and they managed my symptoms better so I was still able to work.
My health worsened in 2021 during my pregnancy: I developed asthmatic painful conditions, terrible pneumonia, very severe post covid symptoms, and pulmonary hypertension. In the past two years I have been hospitalized nine times and have become oxygen dependent.
My main problem is that I experience shortness of breath during any activity. But it is difficult to stay at home because oxygen refilling is expensive, and I cannot afford it. I am not working currently and no longer have financial support from family, so this is how I joined this palliative care unit for assistance with daily needs.
The burden goes further than my physical health and finances. My illnesses have cost me loss of relationship (with my children’s fathers) and while in the hospital, I am far from my children. To my family I felt like I have become a curse or a bad omen. I do have good friends though: I have been assisted socially and financially by the palliative care team, which has given me some relief. I am feeling hopeful now since my health is in the right hands of this family, the hospital-based palliative care unit. I realized also that I feel better when supplementing my medication with vitamins. However, these immunity boosters and food supplements are expensive and difficult to buy.
It feels bad to be in the hospital without my children, I therefore call on assistance from the management at the hospital or with the palliative care unit to help financially unstable patients with oxygen concentrators at home or oxygen cylinders refilling and transport charges.
Otherwise, I am so thankful for the services rendered to us by the palliative care team. Thank you so much for understanding what patients like me go through during such sickness, and for holding their hand for assistance. Life still continues after COVID-19, but I am weak and still require working to earn a living which is so hard with this breathlessness. I request skill building lessons from home to assist patients earn some income.
Conclusively, may God heal all patients and provide necessities in all aspects of life. May God still use good people to fund the organisation so that patients can smile.
Educational activities
Our training and education section has been quite busy in this period with lots of training activities, we have continued our partnership with Makerere University to provide training.
We have hosted 5 intern doctors on a 2-week rotation each in the Palliative Care Unit, 16 participants on the Palliative Care Initiators course of Hospice Africa Uganda who are from the Francophone countries for a 1-day placement, 3 international visiting doctors attached to Naggalama hospital to see our work for 1 day, 15 students on the BSc Palliative Care of Hospice Africa Uganda -Institute of Hospice and Palliative care, 7 undergraduate students each week for 5 weeks on their rotation in the Palliative care unit. We also completed a 1-day refresher training in Paediatric PC for our hospital volunteers supported by funding from our friends at Uganda Cancer Trust UK (UCT-UK).
We also have ongoing mentorship and support at place of work for 16 trainees on the UCPCNLFP Uganda Children’s Palliative Care Nurses Leadership Fellowship Programme that we are currently running in conjunction with the International Children’s Palliative Care Network (ICPCN) and University of Edinburgh and with funding from the Burdett Trust for Nursing.
Below we share some quotes from the medical students who rotate through our Unit.
“Prior to my rotation in Palliative care Unit Mulago, I had a lot of misconceptions about Palliative care. I have learnt a lot and enjoyed the fact that it is holistic medicine that looks at the whole patient, there is a lot of empathy involved which is not like other spheres of medicine that only look at the clinical aspect of the disease. Special thanks to the Doctors and Senior House Officers (SHOs) and interns who sacrificed time to teach us and YES I have left a better doctor” Andrea, Medical student, IUIU
Rotating in palliative care has taught me that each and every patient as a whole deserves maximum dignity regardless of who they are and where they come from. I have learnt to inform patients fully of their condition and diagnosis by communicating exclusively with these patients, I am glad I met all the health workers in this rotation since I have learnt from each one of them”. Amelia, Medical student
Research and Conference activities
We were honoured to participate at Indian Association of Palliative Care Conference (IAPCON), we had representation from 3 of our team including Dr. Mhoira, Prof. Julia and Dr. Peace together with other partners from India.
Fundraising activities
We are excited to have participated in the GlobalGiving “Little by Little campaign” and thank all our friends who supported the project. Locally we are also approaching individuals and corporate companies to support our work to the services that we give to the community can continue.
We hope you have enjoyed our update! If you have any questions or feedback, please do email us at info.pcerc@gmail.com and we will be very pleased to engage with you.
Best wishes
PcERC team.
There are just a few days remaining in 2022, which is often the time to stop and reflect on the year. We first want to say a big “thank you!” to our team, partners, and supporters in Uganda and around the globe. The year of 2022 has come with its own struggles from the COVID-19 pandemic and an Ebola outbreak in Kampala, with an Ebola Virus (EV) isolation centre in our Mulago Hospital. This year also has brought cherished memories in time spent with patients and their families, opportunities to educate and train others, and highlights in network and mutual learning through conferences. We hope you enjoy our updates over the last few months (September to November) below.
Patient highlight: Mama “N” – Seeing hope and life again.
This is a short testimonial from patient N who has benefited from our palliative care services. Our services to patients and their families are holistic (providing physical, psychosocial, emotional, and spiritual support) and are free of charge to patients, thanks to your support. All quotations and pictures are taken with written consent; see bottom of report for photo of patient with social worker Toko.
“I didn’t know what to do. I felt lost. I felt betrayed and hopeless. I just wanted to die.” These are the words from Patient N, or Mama N, who is 37-year-old female admitted in Mulago Hospital with a cancer of the eye. Mama N comes from Karamoja region, a very remote area of northeast Uganda, so she was far from the support of friends and family. Tragically, she was neglected by her husband and family after they were told about her cancer diagnosis and long hospital stay.
Although she was a patient herself, Mama N was left to take care of her three children alone. They soon struggled to have enough to eat; often they would have one meal a day, and sometimes they would just have to do with the hospital porridge. They tried to take care of themselves, needing items like soap or more clothes, but their little finances were drained to pay for the needed investigations and medications. To make matters worse, Mama N and the children had a communication barrier: the health care workers could not speak her language and it was difficult to find a translator.
Then situation got worse. As she started her chemotherapy treatments, the doctors told her that she could no longer breastfeed her infant. Mama N would need to buy milk for her baby, but with barely enough money for meals or soap, it seemed impossible.
Enter in our palliative care unit: when we met Mama N, we immediately started a holistic approach. This included supporting the clinical (medical) needs, and through our volunteer social workers, providing money through the comfort fund and giving psychosocial and emotional support. The team helped Mama N in navigating the Uganda Cancer Institute as well as ensuring translation support for her to communicate with medical staff. Mama N and her children are not neglected anymore but are visited often and supported by the team.
“I now can afford to have a smile on my face,” she told us, “Which was very difficult for me because I thought life had come to an end … May God bless you; please continue having big hearts!” And as a team, we are grateful for the financial support from everyone at GlobalGiving, as it allows us to support patients and families like Mama N and her three children, who are vulnerable and in great need.
Clinical care and relationships
We take pride in knowing our patient and families’ names and building a relationship with them during their hospitalisation and beyond. Patients are not numbers or medical conditions to us, but we want to share with you some data so you can understand our clinical care in the hospital wards.
In the three months of September, October, and November our clinical team including social worker volunteers visited our patients 965 times. We also contacted them by phone, with 664 calls in this time. Phone calls are especially needed to provide consultation and consoling for patients who are discharged, or to provide grief and bereavement support to the families of patients who have died.
We are grateful for your continued support to provide airtime for making calls or monies to support the patients in small ways (patient comfort fund for food, soap, or small toys).
Patient demographics
We have cared for 130 patients in both Mulago and Kiruddu Hospitals. While 24 of the patients were previously admitted, we registered 106 new patients in the last three months.
We provide continued care for the patients and their families during and after their hospital stay. Whenever possible, when a patient is discharged, we also connect the patient and their family to another palliative care service in their home area. We are happy to note that with our assistance, more than half of patients were able to have their pain and other symptoms managed and thus be discharged from the hospital. We are also honoured to work with the 33 patients and their families where the patient died (R.I.P. on Ward) for holistic care continues in the end of life and grieving process.
Please look at the bottom of this report for charts or graphics about the patients we serve.
Educational activities
Our palliative care unit is experienced in the training and mentoring of other health care workers. From clinical clerkships with postgraduate doctors at our partner Makerere University to training social workers on bereavement support, our mission is to promote excellent and accessible palliative care services for all.
In the last three months, we trained both on the ward (clinical, hands-on practice) and through presentations and organised training sessions. We had many medical students from Makerere University, including 74 undergraduates, 2 postgraduates in Internal Medicine and 3 postgraduates in Family Medicine. Likewise, we hosted 32 undergraduate medical doctors from Islamic University In Uganda (IUIU) on the hospital ward and for clinical teaching sessions. We also worked with two intern doctors at Mulago Hospital, as they did a rotation in palliative care.
Our team hosted a palliative care course for 11 nurses and pharmacists at Kiruddu Hospital in person, on September 15-16, which was sponsored by partner Cairdeas IPCT. Then, during October 24-26 we started UCPCNLFP, that is, Uganda Children’s Palliative Care Nurses Leadership Fellowship Programme. The UCPCNLFP was attended virtually by 16 Uganda head nurses and nurse trainers from 6 districts in Uganda and is being run in conjunction with the International Children’s Palliative Care Network (ICPCN) and the University of Edinburgh and funded by the Burdett Trust for Nursing. The second virtual session for UCPCNLFP happened on December 9-10.
Both trainings covered foundational topics such as what is palliative care and pain and symptom assessment, which includes assessment and addressing other non-clinical needs: emotional, mental, psychosocial, and spiritual. Training then branched to the complexities to managing pain and symptoms, communication and breaking bad news, and navigating the end of life and bereavement support. Please see the bottom of the report for pictures from the trainings.
Research and Conference activities
We were honoured to participate the virtual East Central and Southern Africa College of Physicians (ECSACOP) conference on September 24-26. This was the 7th annual ESCACOP conference with the theme of “Tackling the burden of communicable and noncommunicable diseases in Africa in the era of expanding digital health technologies.” Our contribution includes the following presentation: “Exploring the needs of people living with chronic disease among the refugee and host communities of Obongi district and Adjumani districts in Northern Uganda,” by Dr Elizabeth.
Other educational activities included participating in the Africa ECHO sessions, the World Cancer Congress in Geneva, and the University of Edinburgh webinars on Advancing the role of higher education institutions (HEIs) to support palliative care education in lower- and middle-income countries (LMICs).
We hope you have enjoyed our update! If you have any questions or feedback, please do email us at info.pcerc@gmail.com. And as the year draws to an end, please join us in reflection of the months past and in anticipation of better days to come.
Well wishes and happy holidays,
PcERC team.
To all our supporters and friends, thank you so much for your continued support of our work, we are delighted to share with you updates from the team on what we have been able to achieve in the last three months since we last shared with you.
1. Patient care
In our provision of care to the patients and their families, the team continues to observe the COVID-19 control and prevention guidelines and measures including; social distancing, sanitizing our hands and wearing masks as we care for the patients even when there are now low fewer infection rate and admissions in the hospital.
However, even after the lifting of the lockdown and restrictions due to COVID-19 the after effects are still on and affecting our patients and their families and the entire economy. Even though our patients are now able to come to hospital, and access services, transport fares is still a challenge to move from one place to another as the costs of fuel continue to raise making it un affordable for many of our patients.
With your support, in this period the team has been able to care for 310 patients and their families in Mulago and Kiruddu hospitals with 1,115 physical reviews/contacts and 554 phone contacts. This enables follow up patients and their families to ensure adequate symptom management, and continuity of care through referrals to community based palliative care services, referral pathways consultations between the multidisciplinary team as well as bereavement support to families.
With your financial support, the team is also able to buy the masks and sanitizers that are needed for their own protection and safety while caring for the patients.
Below we share with you some reflections from our patient care service.
Restoring hope and Bringing joy
A 38-year diagnosed with a lung disease admitted on the pulmonary ward in Mulago hospital with difficulties in breathing.Two years ago he felt hopeless and he thought his days on earth were limited as he struggled to yarn for his breath. A few months later he was admitted on one of the wards with difficult in breathing due to complications with his lungs.
He was then linked to the palliative care team for pain, symptom management and emotional support since he had no care giver.
All his dreams and aspirations were rudely shattered due to the illness in his lungs which largely affected his breathing forcing him out of work. He painfully watched as his friends went about their work and businesses. Neglect of family members, limited resources to take care of his two children affected him psychologically! However, with regular visits by the team including volunteers his symptoms and now controlled and continue to provide psychosocial support and counseling which has restored his hope and meaning in life hence improving his wellbeing and quality of life as the team became part of his family.
He says “Before I came to the hospital my family members chased me away from home and said they could never sell any properties that my late father had left to help me, so I struggled since I was new at Mulago hospital and didn’t know where to start from”.
I am happy because I have been supported by this wonderful team who visit me regularly, they counsel me and give me hope. I sleep well, eat well, and I am not worried any more. Thank you for loving me I feel valued and cared for”
The story of A is an inspiration and evidence that we your continued support we can make a difference in patients life’s. Together we can restore hope.
2. Education & Training
Training of undergraduate medical students and postgraduate students
In the last 3 months, we have trained 125 undergraduate medical students from Makerere University; 34 from the Islamic University in Uganda, and 6 palliative care nursing students. On the 14th July, we hosted 8 students on the palliative care initiator course with the Institute of Hospice and Palliative Care. These came from 4 African countries including; Ethiopia, Nigeria, Sierra Leone and Uganda. It was a great opportunity to support people who are passionate about starting palliative care in their own settings, as we show cased how much we have been able to do in Uganda especially as a hospital based palliative care unit in a National Referral hospital
Through our advocacy, Mulago Hospital has now availed us Intern students who rotate in the Palliative Care Unit on a bi-weekly basis, they come to learn but are an additional resource to the team that is so stretched.
We share with you some of their learning below;
“It was a very rewarding experience rotating in a palliative care unit. It has opened up my mind as regards looking at patients holistically and attaching meaning to every question and answers given by the patient. I gained a lot of insight as far as breaking bad news. Thank you very much being a great team” by Student IUIU
“it was a wonderful opportunity to work with a very dedicated palliative care team that is well knowledgeable and skilful and also committed to making a difference in patients lives through holistic approach. And I promised to do the same in practise.” Intern Doctor - Mulago
3. Research and research related activities
3.1 International African Palliative Care Conference 2022; We are delighted that we will be presenting our work at the 7th International African Palliative Care conference that will be held 24-26 August 2022; Kampala, Uganda with the theme: Palliative Care in a pandemic!
The team has had 4 abstracts submitted and accepted as oral presentations at this conference and we are looking forward to this exciting event.
3.2 Research project: Exploring the Needs and lived experiences of people with chronic disease among the refugee and host communities of Obongi district and the experiences of Village Health Teams workers in providing PC in Obongi and Adjumani districts project. We continue we data collection for this project alongside our partners Cairdeas IPCT and Peace Hospice Adjumani. This project is funded by UKAid- From the British people.
Thank you so much for taking time to read our updates, we share these updates regularly and for more information about our work please free to contact us on; info.pcerc@gmail.com
Your continued support is much valued, God bless you all
PcERC team
To all our supporters and friends, thank you so much for your continued support and we are delighted to share with you updates from the team on what have been able to achieve in the last three months since we last shared with you.
1. Patient care
Our economy is our now fully open and business is back to normal with all sectors fully functioning whilst observing the COVID-19 control and prevention guidelines and measures including social distancing, sanitizing our hands and wearing masks. Our patients are now able to come to the hospital although transport is still a challenge as transport fares to move from one place to another are still high.
With your support, in this period the team has been able to able to care for 246 patients and their families in Mulago and Kiruddu hospitals with 924 physical reviews and 434 phone contacts to identified patients and their families. This relates not only to clincial care in the hospital but also any contacts that relate to patient care including; follow up on symptom management, referrals to community based care for continuity, consultations between the multidisciplinary team.
With your financial support, the team is able to buy the masks and sanitizers that are needed for their own protection while caring for the patients.
Below we share with you some reflections from our patient care service.
How Salima’s Life Story was transformed by palliative care;
As told by Toko our Social work coordinator
‘’ Look at me now. Iam healthy, I can smile, breath, and talk, I really look youthful for a 23-year-old. Would you be able to tell that I am HIV positive? It is a surreal experience for her that she is still alive now, especially when her mind flashes back to March 2022.
“I was bed ridden all the time, suffering with difficulties in breathing as a result of contracting tuberculosis and had to depend on oxygen most of the time. I had of course seen my relatives and friends die of AIDS, and honestly, the symptoms I had were quite familiar but I always blocked the idea that I could be HIV positive out of my mind but I had to face the reality. I should have been wiser and careful”, she recalls with teary eyes.
She continues to say… “I grew weaker and weaker, thinner and thinner by the day that I could no longer support myself, all my clothes fitted me no more. The disease was biting at me with vengeance. I was surely dying to my relatives and friends who had abandoned me, it was a matter of time and I would be dead”
While abandoned at the hospital, this great team found me - to me they were strangers but now they are my family and friends.
“I am so grateful to the palliative care team and the volunteers for the support they gave me! They listen to people and give time to us to express our emotions and feelings. They counselled, educated and empowered me and put a smile on my face."
2. Education & Training
Training of undergraduate medical students and postgraduate students
In the last 3 months, we have trained 73 undergraduate medical students from Makerere University; 2 Family medicine physicians, 11 undergraduate medical students from the Islamic University in Uganda, 2 masters’ students in PC from the Institute of Hospice and Palliative care as well as 11 initiators from 7 Francfone African countries.
We share with you some of their learning below;
Ongoing online learning and discussions:
COVID-19 introduced us to a new norm of online meetings and gatherings and these has become part of our lives and its with your support that the team is able to get the internet connection to enable them attend these meetings. In this period, we have attended a number of online discussions that included; The Palliative Care Association of Uganda virtual update meetings, journal clubs and expert lectures of the PC fellowship that is being run by PcERC supported by CairdeasIPCT.
3. Research and research related activities
We have presented at the following conferences;
IAPCON conference presentation. The team attended and participated in the Indian Association of Palliative Care Conference which took place 11th-13th February 2022, during which our main partners CairdeasIPCT with its partners; Mehac Foundation, PallCHASE and Global Health Academy of University of Edinburgh hosted a pre-conference workshop on Palliative care and planetary health in humanitarian settings, at this workshop we presented a paper on “Ensuring community generated data – Uganda by Dr.Mhoira Leng and Chris Smith, a piece of work from our Transform project. We were also involved with our partner ICPCN in a pre-conference workshop on children's palliative care.
The African Palliative Care Conference will be held 24-26 August 2022; Kampala, Uganda with the theme: Palliative Care in a pandemic. The team have submitted four abstracts to this conference and if accepted, we will be delighted to present our work.
Research project: Exploring the Needs and lived experiences of people with chronic disease among the refugee and host communities of Obongi district and the experiences of Village Health Teams workers in providing PC in Obongi and Adjumani districts project. We received final ethics approval, data collection started in January and is ongoing alongside other mentorship and supervision activities and is expected to complete by June 2022. This project is funded by UKaid- From the British people.
Thank you so much for taking time to read our updates, we share these updates regularly and for more information about our work please free to contact us on; info.pcerc@gmail.com
Your continued support is much valued, God bless you all
PcERC team
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