Clinical care and relationships
In the three months of March, April and May our clinical team, including social worker volunteers, visited our patients 1,139 times. We also contacted them by phone, with 847 calls in this time. Phone calls are especially needed to provide consultation and counselling for patients who are discharged, or to provide grief and bereavement support to the families of patients of those who have died. We are grateful for your continued support that enables the team to provide care to these patients and their families.
This time we would like to share with you a story from one our own team. Please read Ronald’s story below;
“I WENT THROUGH IT; I UNDERSTAND THE PAIN CANCER PATIENTS GO THROUGH”
My name is Ronald, a cancer patient survivor. Currently I am a volunteer social worker, working with the Palliative care Education and Research Consortium (PcERC) in Mulago Hospital.
For 12 years I have been practicing my social worker skills in Mulago Hospital. It has helped me to become a better social worker and to understand that when our patients die, they die with dignity and with quality of life. Patients with palliative care needs, though they are sick, they still have value and are equally important like any other human being.
Through my volunteering, I have been involved in many trainings (such as the COME hospital care training), whereby we were equipped with skills of caring for patients and their families. I have gained skills in some research activities, such as data transcribing.
Working in the hospital has greatly improved my interpersonal relationship skills and communication skills. I have learned to be a good listener, a good decision maker, and not to be judgmental to people for the mistakes they made in the past.
However, there has been also challenges I have encountered when doing palliative care and these include:
Thank you to all the donors and partners for all the support you give to our palliative care unit. For me, personally, I really appreciate the good work you do through supporting our patients and the activities of PcERC.
Patient demographics
We have continued to care for patients and their families during and after their hospital stay and whenever possible, when a patient is discharged the team follows up to provide further support via telephone including referral to another palliative care service in their home area. The majority of our patients have their pain and other symptoms managed by the time they are discharged from the hospital.
We were honoured to care for 148 patients and their families on our program, in both Mulago and Kiruddu hospital through 1,139 physical reviews and 847 telephone calls. where the patient died (R.I.P. on Ward) the team continues to provide bereavement support through the grieving process.
Please look at the pictures for charts or graphics about the patients we serve.
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 partner Makerere University. our mission is to promote excellent and accessible palliative care services for all. In the last three months, we have trained and mentored the following categories of professionals;
Research and Conference activities
As the Palliative Care fraternity in Uganda prepares to hold the 4th Uganda Conference on Cancer and Palliative Care conference, due to take place 14th-15th September in Kampala, the team is pleased to submit 5 abstracts from our work that included;
We look forward to sharing our work at this conference. Please look out for highlights from the conference in our next updates report.
We hope you have enjoyed reading our update! If you have any questions or feedback, please do email u info.pcerc@gmail.com.
Best wishes,
PcERC team.
This is our first report in the new year and we wish everyone the very best of 2023!
Below we share with you our highlights on what we have been able to do 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 3 months (December -February) below.
Patient highlight: V’s Story: "To Love and care is the Palliative care team!"
By Ronald and retold by Hannah
All quotations and pictures are taken with written consent; see bottom of report for photo of patient with volunteer social worker Ronald and her mother.
In our palliative care unit, we offer free palliative care services to anyone with serious health-related suffering and palliative care is not limited to those who are dying (end of life). Quality of life, as we understand it, comes from holistic measures: pain and symptom management are crucial aspects, but we cannot forget the assessment and support in areas such as psychosocial and spiritual care.
Ronald, a volunteer at Mulago Hospital’s palliative care unit, shared his experience caring for Patient V, who is currently undergoing radiotherapy for cancer around her arm (Rhabdomyosarcoma).
We have been visiting Patient V, a 12-year-old female from Western Uganda, since she begun to have swelling in her arm in 2021. Her grandmother took her and applied herbal medicine, but her arm continued swelling, so she was taken for surgery and had a biopsy at the local hospital. Patient V was referred to Mulago Specialised National Hospital in February 2022 when it was confirmed that she had cancer. The primary doctors consulted the palliative care team regarding V's pain management and to hold a family conference about the family’s expectations, treatment goal, disease process and V’s understanding of her condition. This was done and it went well with lots of discussions and emotions but was quite rewarding to the family who now have insight into what is happening and are being supported to cope and plan for the future.
We continue to visit V and her family as she receives her radiotherapy treatment. One of the days when we visited her on the ward the family caregiver said “as a family, we are very pleased with the care that we have received during our stay in the hospital. All the staff are passionate, caring and helpful and for this, we greatly appreciate and we feel we have been treated with dignity, keep up the good work.”
Ronald and I spoke more about V and the role of palliative care, which Ronald sums up as “to be her family away from home.” He explained that the palliative care unit has identified financial needs and social problems through the family conferences. They used the donations to the unit (via the “Patient Comfort Fund”) to support travel expenses to the hospital for radiotherapy, bought them food while they were at the hospital, provided pampers (diapers) for V as well as giving her some small toys. Ronald and other trained volunteers have also collected her drugs as needed from the pharmacy and taken time to provide spiritual care through counselling and prayer.
As I reflect on my conversations regarding V and her family, I realise that it takes teamwork to support a child with palliative care needs. For V, this team has been the one or two family members from home, her “family” of the palliative care unit doctors, nurses, and volunteers, as well as friends around the globe who support our Patient Comfort Fund. Thank you for your role in providing compassionate care to V; each donation does make a difference for our patients and their families.
Clinical care and relationships
In the three months of December, January and February, our clinical team, including social worker volunteers, visited our patients 965 times. We also contacted them by phone, with 664 calls carried out during this time. Phone calls are especially needed to provide consultation and counselling for patients who are discharged, or to provide grief and bereavement support to the families of those who have died. We are grateful for your continued support that enables the team to provide care to these patients and their families.
Patient demographics
We have continued to care for patients and their families during and after their hospital stay and whenever possible, when a patient is discharged the team follows them up to provide further support via telephone including referral to another palliative care service in their home area as appropriate. The majority of our patients have their pain and other symptoms managed by the time they are discharged from the hospital. We were honoured to care for 83 patients and their families on our programme, in both Mulago and Kiruddu hospital through 704 physical reviews and 704 telephone calls. Where the patient died (R.I.P. on Ward) the team continues to provide bereavement support through the 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 have trained and mentored the following categories of professionals;
Research and Conference activities
We have once again been honoured to participate at the 30th International conference of the Indian Association of Palliative Care (IAPCON) that took place 10-12 February 2023 in Bengaluru, India with the theme: “The emergence of subspeciality Palliative medicine” We were represented by Dr.Mhoira, Prof. Julia and Dr. Peace.
We hope you have enjoyed reading our update! If you have any questions or feedback, please do email us at info.pcerc@gmail.com.
Best wishes
The PcERC team.
As the year comes to an end, we want to reflect on that has happened and thank all our partners in Uganda and around the world. The year of 2022 has come with its own struggles from the COVID-19 pandemic and the current Ebola outbreak in Kampala, with our own 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 (August to October) below.
Patient highlight: offering peace to create a new dream
This is a snapshot of a patient Z 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. Quotations and pictures are taken with written consent.
Patient Z is 47-year-old male admitted with interstitial lung disease with his main distress as difficulty in breathing. He is now oxygen dependent and unfortunately cannot afford an oxygen cylinder at home, hence has been in the hospital for more than 6 months now. When our clinical team that includes volunteer social workers first met him, he was greatly disturbed with overwhelming chest. Z was then reviewed by our senior nurse Florence and volunteer social worker Vicky.
Having controlled his pain and symptoms, he had this to share with social worker and volunteer coordinator, “All my dreams had rudely been shattered because of the illness, I am greatly affected with difficulty in breathing associated with pain. I have been forced out of employment and am unable to support my family of three children and my wife. I painfully watch my neighbours go about their business and provide for their families.”
“When the doctors told me that I will have to be on oxygen for life, I was so frightened,” Z shared in the interview, “and saw death get closer to me, because I was told my lungs had become weaker and [I] was to entirely depend on oxygen for the rest of my life. I had reached a point of telling my family to just let me go.” Z says he would ask, “Why me?? Am I being bewitched? Is this a price I am paying for loving God?”
Z’s story is not an isolated case; there are many more patients going through similar experiences and being robbed off the opportunity of having a shot to a bright future and wellbeing. Our palliative care team took time to address the pain and other symptoms of Z, but they also supported him socially and psychologically, as well as providing financial support for basic needs withing the hospital. “They seemed to feel my pain,” Z says. “They would sit next to me and comfort me.”
Z feels more at peace and without pain, he can begin to reimagine his future. His wife can go home and look after the children with occasional visits to support him. He is also happy with the ongoing counselling and support given to him holistically by the team and feels hopeful and encouraged. Z added that they “provided me hope and courage when I felt I couldn’t go on. Before their visits, I felt like a total orphan but now I feel that the angels are with me.”
Z had one final remark that he wanted us to share, as he talked about finding gratitude in our lives. “I realize that as normal healthy individuals, we take so much for granted,” Z says, “such as waking up every day full of energy.” We also encourage you to find the blessings of every day, no matter how small they might be, and to continue to be a blessing to others. 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 Z who are vulnerable and in great need.
Clinical care and relationships
Each patient is unique from their age, gender, condition, and family background. We take pride in knowing our patient and families’ names and building a relationship with them during their hospitalisation and beyond.
In the three months of August to October, our clinical team including social worker volunteers visited our patients 1,203 times. We also contacted them by phone, with 555 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).
Patients by number
We have cared for 135 patients in both Mulago and Kiruddu Hospitals. While 30 of the patients were previously admitted, we registered 105 new patients in the last three months. Below are some details of our patient demographics.
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. Below is our chart for the 135 patients cared for and their outcomes. 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 40 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.
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 have hosted 28 undergraduate medical doctors from Islamic University In Uganda (IUIU) on the hospital ward and for clinical teaching sessions. We also worked with one intern doctor, as she did a rotation in palliative care.
Our team also hosted a two-day training session 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.
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. Enjoy some of the pictures from the trainings below.
Research and Conference activities
For the first time since the COVID-19 pandemic, our team was able to meet international colleagues in person at the African Palliative Care Association (APCA) Conference on August 24-26. (This was also well placed in time, as the Ebola outbreak in Uganda began a month later, in September.) The conference was enriching, from a pre-conference private training in Photovoice research methods, to the full clinical team’s attendance and presentations in the event. Our contributions in APCA 2022 include:
We also 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:
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 for August to October 2022. 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
Dear donors and supporters,
We bring you warm greetings from the team here in Kampala! We hope you enjoy reading our updates as you can see the difference that your support is making in the lives of our patients and their families.
Below we share some highlights from the “Bringing Hope” project since our last update in February.
1. Patient Care
In the last three months, the team has cared for 272 patients and families admitted at Mulago and Kiruddu hospitals and the Uganda Cancer Institute. With 1,042 physical contacts and 508 telephone contacts by the clinical and volunteer teams, we have walked with them through their time during and after hospitalisation.
Below we share with you some reflections from the patient care service.
‘Disappointed and Heartbroken’
Disappointment and heartbreak circled in his mind when the Palliative Care team met Luke (not his real name), a young man with his life aspirations shattered by a lung disease. The 28-year-old had overcome many challenges in his life already from the passing of his father to the struggles to make ends meet with his mother while he attended school. During his studies, he worked hard to become a lawyer and looked forward to a better life for himself and his family. However, when Luke started to have difficulty breathing, his life drastically changed.
“I was so scared, and only death came to my mind,” Luke shared with us on the ward. “I was told that my lungs had been damaged beyond any repair and was to depend entirely on oxygen for the rest of my life. I also heard rumours that I can’t be cured and everybody at home was scared for me too.”
Luke’s underlying lung disease emerged after he went for the COVID-19 vaccination alongside the rest of the law students. While his friends went about their normal routines in classes, study halls, and exams, the complications in his lungs forced Luke out of the classroom and into the hospital ward. “Why is this happening to me?” He asked us. “Why me? Did I do any wrong to get the vaccine? What crime or offence did I commit?”
As a multi-disciplinary team, we offered Luke guidance, support, and counselling. As we took time with him, we were able to restore his hope and hence improve on his social functioning and quality of life. Luke appreciated the Palliative Care team for the visits they made during his hospitalization. “You are such a great team and each one of you is unique yet similar; you make me forget that death is coming my way. Thank you for being there for me and my caregiver. May God bless you so much”.
2. Education & Training
2.1 Training of undergraduate medical students, postgraduate doctors, and other cadres.
We have been involved inteh following training:
Below we share some feedback from students and doctors who completed clinical rotations with us.
“I am grateful that I got this opportunity to come to this health facility where I was able to see patients in need of palliative care, not only curative care. This supportive care to the patients has taught me that when we attend and address the patient’s needs, we create difference in their lives. Skilful lectures from different skilful professionals have also equipped me with insight and knowledge of different conditions in assessing [patients] and their management in addition to what has been taught while at Hospice Africa.” Nursing Student (APDCN course)
“As a family medicine resident who found this wonderful opportunity to have a placement at Makerere Palliative Care Program, I gained incredible knowledge and timely skills, not only to integrate this into my general practice but has prepared me to be a complete 5-star family doctor in all settings including a post-conflict South Sudan. I appreciated the expert lectures that had wonderful global perspectives, the holistic patient assessment skills in Mulago and Kiruddu hospital, and homes family visit exposure at Hospice Africa Uganda.” Family Medicine Resident, Makerere University
2.2 The Transform Adjumani and Obongi project
In collaboration with our partners Cairdeas IPCT and Peace Hospice Adjumani, we have been implementing the project titled; Transforming, empowering communities and health systems to address health related suffering in host and humanitarian settings through capacity building and integration in Adjumani and Obongi districts and is funded by UKAID. We continue with the mentorship and supervision of the Village Health Teams (VHTs) alongside collection data for the Needs Assessment project. We have been blessed to host Chris from our faculty from Cairdeas IPCT, and he has been working alongside the team at Peace Hospice Adjumani.
3. Research and research related activities
We are delighted to announce that we have received the final ethics approval for our research project titled: “Exploring the needs of lived experiences of people with chronic illness disease among the refugees and host communities of Obongi district and the experiences of VHT workers in providing palliative care.” This is part of the project of Transforming, empowering communities and health systems to address health related suffering in host and humanitarian settings through capacity building and integration in Adjumani and Obongi districts and is funded by UKAID. Data collection is ongoing for this project in Obongi and Adjumani districts.
4. The team:
4.1 International volunteers:
We are privileged to host Dr Kate and Dr Kath from the UK, who have come for six and four months respectively starting in March. They are working alongside the team in clinical work, teaching, research (data collection in Obongi and Adjumani) and with the fellowship programme. Both Dr Kate and Dr Kath have brought much energy, knowledge, and skills to our team, which has made a huge difference to our patient care and trainings.
4.2 Esther’s graduation
We congratulate Esther on her graduation with a BSc in Palliative Care of the Institute of Hospice and Palliative Care and Makerere University.
4.3 New Staff
In March, we were joined by Hannah, who is working as an Education Programme Consultant. She assists the team in their cadre trainings, the expert lectures offered to Family Medicine postgraduate doctors, and with the development of the Palliative Care Fellowship.
Thank you so much for taking time to read our updates over the months of March, April, and May. We will be sharing our progress regularly, and if you would like more information about our work, please free to contact us at info.pcerc@gmail.com.
Many blessings from the team,
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