To our donors and supporters,
Greetings from the team here in Uganda and we do hope that you and your loved ones are all keeping safe! We stand with everyone else during these challenging times brought about by the Covid-19 pandemic!
We are happy to share with you highlights of our work in the last 3 months.
The Covid-19 pandemic: For more than 3 months now the country has been in lockdown as a measure in controlling the transmission of the Coronavirus! The numbers of confirmed Covid-19 cases in Uganda have gradually increased and are now at more than 800, many of which have recovered and no deaths (and we thank God for the latter).
The lockdown came with restrictions on movement and association and this greatly affected our service as initially we were unable to get to the hospitals to care for our patients and their families but eventually with approvals from the authorities we were able to get to the patients and right now vehicles are more freely able to move although with limited capacity.
Patient care: Despite the lockdown, our team has remained dedicated to providing care to our patients and families so suffering is reduced. Thank you for all your support in various ways; financially, morally and through prayers. For the time that we were unable to get to the hospitals the team and volunteers continued to give care by giving advise to the ward teams, as well as counselling and spiritual support to the patients and families over the telephone.
In the last 4 months we have provided care to 124 patients and families who were in the hospitals, as well as telephone calls for follow up and referral to community palliative care services as many have been unable to make it to hospital due to difficulties in access to transport owing to the travel restrictions.
Education and Teaching: Following the closure of all leaning institutions in the country, our teaching programs have all had to be suspended, nevertheless we have been involved in other ways. We have participated in the development of protocols in the management of Covid 19 patients including; Psychosocial and spiritual support, continuing holistic care for those with ongoing palliative care needs including access to essential medicines. Symptom control guidelines and triage agreed and implemented for Covid 19 patients.
We have also worked with colleagues in Kerala, India in the development of training materials for COVID-19.
It was a pleasure hosting Natasha from University of Tulane for her placement, she unfortunately didn’t complete her time due to the Covid-19 breakout but appreciated the few weeks that she spent with us.
“Thank you so much for such an incredible experience! I have learnt so much from everyone, your capacity as caregivers and health care professionals is truly astonishing and the work you do as the Palliative Care Unit is really needed. Thank you for teaching me and supporting me while I was here especially in the midst of the corona virus! I will never forget it! I think there is so much to learn from palliative care and the skills of communication you all excel at, as well as caring for the family and caregivers, I have been truly humbled and honoured to be part of it. Thank you and I hope to come back soon! Natasha
Online Learning and discussions: We have participated in a series of webinars and online discussions organized by Palliative care providers across the world to address issues brought about as a result of the Covid-19 pandemic; Locally the Palliative Care Association of Uganda (PCAU) has organised zoom discussions for the palliative care fraternity in Uganda, these are weekly discussions and are ongoing, the aim is to remain updated on what is happening, challenges, suggest and support solutions. Speakers include key people from the Ministry of Health Uganda and the Palliative care providers in Uganda.
We have been happy to have participated in the following sessions on;
On other forums we have participated;
We have also been privileged to attend the first ever online gathering for Cairdeas IPCT our major partner in the UK, where we also had an opportunity to share our work in the last one year. Please read more about Cairdeas on; www.cairdeas.org.uk
We are very thankful for your support that has enabled our service to patients and families to continue even during this challenging time.
Please look out for more in our next project updates report.
Keep yourselves and families safe
God bless you all
To all our donors and supporters,
Happy new greetings from the team here in Uganda!
As we make one year since we launched our campaign on GlobalGiving, we are so thankful that you have been there for us. You have supported us in various ways and we continue to exist because of you and our patients are getting the much needed care that they need.
We are happy to share with you highlights of our work in the last 3 months.
Patient and family care
112 patients and families have benefited from our services across the Mulago hospital site and Kirrudu hospital from the care provided by our multi-disciplinary team in the last 12 weeks!
Our patients!
S is a 35-Year-old male, with a diagnosis of fibrosacoma who presented with a huge fungating tumor of the left arm which was not only giving him sleepless nights but also overwhelming pain and too big and heavy to even turn in bed by himself.
The palliative care team was consulted to review him by the primary oncologist, manage his overwhelming pain and the foul smell from the tumor.
He was assessed and managed for his physical pain and symptoms with oral morphine and metronidazole powder accordingly. using a holistic approach, the distressing issues were explored and these included; discrimination because of the foul smelling discharge that prevented people from getting close to him and the loss of his limb since he was a peasant a sole bread winner. He was also distressed about his young children and kept asking how they would continue without him and hence wishing God could make a miracle for him but also continued to ask why me?
The volunteers who are part of our multidisciplinary team were involved in supporting this family with the psychosocial and spiritual aspects which included regular visits, help with the practical aspects like picking medicines from the pharmacy, spending time with them, praying with them and giving them hope in their seemingly hopeless situation. When surgeons were consulted for their opinion, they were happy to do de-bulking and scheduled him surgery. He had a successful surgery and his world changed at this point he appreciated the role of the multi-disciplinary team as each member played a role, this improved quality of life for the patient and his family, he was discharged, and currently on palliative chemotherapy, he has never stopped praising the Palliative care team and since then other family members also showed up since he is now well!
He said to the team “……You are very special and best family ever that God has given me thank you for being blessing to me……”
Education and training
The Makerere University School of Health Sciences semester commenced on 20th January 2020 and we continue to give the 4thyear medical students palliative care sessions and placements within our education and training section so we have trained 80 students. We are also delighted to be supported to run a training in Management of Pain in Paediatric Palliative care for different categories of health professionals including; Doctors, Nurses and pharmacists, these sessions have been running since November 2019 and are ongoing with placements and mentorship from the Palliative Care Unit. We have trained a total of 92 (40 doctors, 21 Pharmacists, 31 Nurses).
“….. I had enough time for interaction with the patient, exploring their concerns and approach of care. I developed confidence to identify palliative care patients, assessing them, managing some problems and referring as appropriate, thank you for such a great mentoring (clinically) and the whole team for such arrangements…” (Mulago hospital Nurse on placement)
We continue to provide Palliative care sessions to 4th yr Medical students of the Islamic University in Uganda (IUIU) with 56 students this semester.
Uganda and beyond
We are honoured to be able to share our knowledge and build capacity in other countries.
Dr. Mhoira will be away in Gaza in a few days to continue with the teaching of palliative care in the medical school.
International placements
We are hosting Natasha a 3rd Year medical resident from Tulane University, she is here to learn more about palliative care in our setting and will also have an opportunity to visit our partner Peace Hospice Adjumani in the Northern part of Uganda for a different experience of Palliative care in the refugee settlements.
Sharing our Research
We have had an opportunity to share our research work with other colleagues this February (14th-16th) we were represented at the 27th International Conference of the Indian Association of Palliative care (IAPCON) in Guwahati, Assam, India. We were represented by Dr. Mhoira and Prof. Julia and we had the following presentations.
(details of all these and others are available on the Cairdeas resources section; www.cairdeas.org.uk)
We thank you for reading our updates and please look out for more in our next project updates report.
May this year bring lots of hope and blessings
“Transforming lives, changing systems and bringing hope”
To all our donors and supporters,
As we come to the end of the year, there is a lot to be thankful for but most importantly your generous support towards our work because you have played a vital role in the existence of this team as we bring hope to the patients and families that we care for and we do not take this support for granted.
We bring you some highlights from our activities in the last 3 months.
Patient and family care
In this period our multidisciplinary team has provided care to 120 patients and families, through the relief of pain and symptoms as well as providing social, psychological, spiritual and practical support through our dedicated team of volunteers.
Sharing knowledge through education and training
We have had a lot going in our education and training section from both within Makerere University and other institutions that we support. We have provided training, mentorship and placements as well as examination to the following groups of students:
Placements:
Sharing our Research
It has been a very busy period in terms of research in the region and internationally, and we have attended and shared at several conferences including the following:
1. Uganda Cancer Institute & Palliative Care Association of Uganda biennual conference; 5th-6th September 2019, Kampala, Uganda; we were represented by; Prof. Julia Downing, Dr.Elizabeth Namukwaya, Dr.Jack Turyahikayo, Dr.Natalie Webber, Ms. Elizabeth Nabirye, Ms. Florence Nalutaaya & Ms. Vicky Opia; we had the following presentations;
2. ESACOP conference, 5th-7th September 2019, Lusaka, Zambia; We were represented by Dr. Mhoira Leng.
3. 6th International African Palliative Care Association conference, hosted by the Ministry of Health, Rwanda; 17th-20th September, Kigali, Rwanda; With the theme: Palliative care and Universal Health coverage. We were represented by Dr. Jack Turyahikayo, Prof. Julia Downing and Dr.Mhoira Leng and we had the following presentations;
4. THET conference 25th-26th September 2019, London, United Kingdom; we were represented by; Prof. Julia Downing, Dr. Peace Bagasha and Ms. Vicky Opia (from our partnership with Peace Hospice Adjumani who gave a key note speech at this conference) we had the following presentations.
5. On the 3rd October our team; Dr. Mhoira Leng, Prof. Julia Downing, Dr. Peace Bagasha and Ms. Vicky Opia joined other colleagues at the University of Edinburgh at a seminar looking at mulit-morbidity and health in humanitarian settings and our team shared experiences of delivering Palliative care services in refugee settings.
Hosting international colleagues
We have been privileged this year to host 4 amazing colleagues; Dr. Natalie Webber, Dr. Fiona Porter, Dr.Polly Noble & Dr.Phillipa Guppy. It’s been such a pleasure to have them working with us, caring and giving hope to our patients and families, teaching palliative care and supporting the team in different ways, their input was invaluable.
Natalie left a beautiful message for the team
“What I can say? It is hard to summarise this last year with the team. We have been through so much together that I felt very much part of the PcERC family. Thank you so much for all the invaluable and much needed work that you do. I have learnt a lot from each and everyone of you and I will take that with me as I return back home. It has been a real honour and privilege to work alongside you this year in everything that you have achieved- teaching, research, fundraising, conferences etc
You should be very proud of what you have accomplished with the difficulties and challenges that you have faced. I hope that you will continue to grow and spread the palliative care message to many more patients and families in years to come. Sincerest thanks and much love to all.”
We thank you for your ongoing support and wish you all the best for the upcoming holiday season and New Year.
The PcERC Team
We thank you for reading our updates and please look out for more in our next project updates report.
We wish you a Merry x-mas and a happy and prosperous new year! s
“Transforming lives, changing systems and bringing hope”
To all our donors and supporters,
We once again extend our sincere gratitude for your generous contributions to our work and because of that we continue to make a difference in the lives of the patients and families under our care.
We are delighted to once again share with you some updates from our work over the last 12 weeks.
Patient and family care
Our multidisciplinary team has provided care to 250 patients and families, through the relief of pain and symptoms as well as providing social, psychological, spiritual and practical support through our dedicated team of volunteers. Please read Moses’s story about care received from a team that he did not know before!
Moses (not real name) is a 35yr old, who got a pathological fracture after being shot by thieves while on duty. He has been sick for 3 months and admitted in the surgical ward in Hospital.
He is under the care of the Palliative care team working alongside the primary doctors, the volunteers have been supporting him through his pain and symptom control, our volunteers visit him and his brother who is the main caretaker. The doctors requested for an operation that would help to revise his problem, but it was too expensive and the family could not afford due to financial constraints. This was very distressing to the brother and wife, watching their loved one in agony and in a confused state. It seemed really a hopeless situation for them.
However, the volunteers were able to liaise with one of the church members who was able to raise some funds for crutches and this was able to bring hope and a smile to Moses and his caretaker who would always cry because of not being able to walk.
Through the regular visits by the volunteers, the caretakers were able to share their worries and fears, which included not being able to get any support from the patient’s employers and how they could transport their loved one’s body if he died in the hospital!! The volunteers informed the clinical team and the social work department who then facilitated the patient discharge and also referred them to a community Palliative care centre for continuity of care.
The family appreciated the time, help, care and love they were shown at their darkest moment and they had this to say“Thank you for loving us and visiting us you did not know us and we did not know you but this has created a relationship between us which I would not want to end! You should extend the love to the rest of the other patients too”.
A few days after he was discharged back home he died but the family was very grateful and we have remained in touch.
Sharing our Research
This is a very busy period in terms of research in the region and internationally with several upcoming conferences, we are delighted that we shall be presenting and represented at the following conferences;
Look out for our next report for updates from these conferences!
Sharing knowledge through Education and Training
In this period, we have had a lot going in our education and training section with the commencement of the University semester.
We have trained the following groups of students;
We are also hosting Dr. Chimwemwe Kabaghe from the Palliative Care Support Trust, Malawi, for a 1-month placement, she is working alongside our specialist team to experience palliative care in a different setting, she reflects on her experience so far ….
Work Begins
The MPCU office is quite close to the guesthouse, yay! It is smaller than I expected but somehow everyone manages to slip and slide past each other and fit in quite well. It feels packed but it really has enough space for everyone. Everyone is very welcoming to the Dr from Malawi. I feel quite right at home as I settle in. Everyone is also busy and there are like hundreds of students just crawling about the place like little ants. Even palliative care has a few hundred of their own…ok maybe 15 or so. But that is still a lot.
Ward Rounds: STC and LTC and Private are faaaaar. They are also uphill. So on ward round days we huff and puff to them, and meet hundreds of other students and it’s a bit tricky to do any teaching. For me, the first 30 minutes in the first week were spent calming down and wiping sweat and hyperventilating. I realized I am quite unfit. But this is good for my heart it seems. By second and third week I was a pro, walking fast and minimal sweat. Maybe the weather also helped, when it got cooler. But I felt comfortable moving around the places we usually went to. It has been a while since I was in a teaching ward round, but it was great each time. All the doctors are a river of knowledge. I learnt so much. I learnt the things I had overlooked in my practice, listed things I need to read, learnt how to treat the students and how to treat the patients, realised that Uganda has the same issues and it feels weirdly like home, I fit right in. The more time I spend with each doctor, the more I see how much they have so much knowledge in what they do and more, I am very inspired to do school (something I didn’t want to do at first). I see that there is more than what we do in Malawi and there is more we can do even with limited resources. Everyone is very helpful in giving information and making sure I get as much out of the experience as I can. I am truly and eternally grateful for that.
Student Teaching: Both undergraduate and post graduate classes were invaluable. Learning how to come up with objectives, use flip classrooms and interactive sessions were truly exciting. Teaching and participating in those classes helped me to have a greater understanding of palliative care and how it can be incorporated into the curriculum. The classes challenged my mind and got me to think broadly on issues as well as cases. Working with various lecturers in different situations was great and I gleaned a lot of information on how to approach teaching. Meeting different students from different universities was also wonderful, I learnt a lot on their enthusiasm to learn, or the lack of it.
Others: Spending time with the doctors individually, in between either seeing patients or at the office was of great value most. I learnt how things work on the ground, how to approach authorities, what to do to get maximum benefit in certain situations. Drs Liz, Liz, Jack and Natalie all gave great information. Particularly Dr Liz who was stuck with me and had to ensure I had something to do each day. She was truly great. Of course the time spent with Dr Mhoira was mostly out of the hospital and teaching premises, but each moment was not wasted as I got all the overall and nitty gritty information. Link to read widely and think assertively. Not forgetting doing PBL and rounds with Rose and Josephine. Grace and Jenny were fantastic and Grace is a great organiser, getting things done with promptness. I may not mention everyone, but I appreciate their input or even just presence during my stay.
My not-very-last words will be, please continue to be warm and kind and welcoming to many more that will come through those doors. Your vast experience does not only end at teaching them, but you indirectly impact many more countries through us, who visit.
Thank you for reading, more updates about our work coming up in November!
“Transforming lives, changing systems and bringing hope”
To all our donors and supporters,
We take this opportunity to thank all of you who have contributed generously to our “Bringing hope” campaign, every donation makes a difference in the lives of the patients and families under our care.
We bring you some updates of our work over the past 12 weeks.
Patient and family care
Our multidisciplinary team has provided care to 102 patients, through relief of pain and symptoms as well as providing social, psychological, spiritual and practical support through our dedicated team of volunteers. Please read Dx’s story about hope that has been restored.
Dx is a 17-year-old female diagnosed with cancer of the breast and admitted in the Uganda Cancer Institute. She comes from the western part of Uganda and is being cared for and supported by her father and sister, she came in hospital after a social media campaign and Radio talk shows about cancer in their community.
She has spent three months in the hospital where she has been receiving chemotherapy and radiotherapy treatments respectively.
She was referred to the palliative care team by the primary doctors on the ward because she was going through a lot of pain and would cry the whole day and night and have sleepless nights.
As a multidisciplinary team the palliative care doctors and nurses were able to visit her and prescribe morphine which helped in relieving her pain and make her as comfortable as possible. The volunteers supported her by visiting her regularly every afternoon by listening to her stories and concerns, praying for her since she has a very strong faith in the lord and supporting her through physical exercises.
She is so grateful for the support and visits that have been made to her by both the palliative care team including the regular visits from the volunteers who have encouraged her, strengthened her by giving in their time to be with her she feels loved and cared for.
“I know this is not a punishment to me! I still love God and he loves me too ……please keep coming to check on me you are part of my family”
Sharing our Research
The team has been involved in international partnerships and collaborations and sharing, we have had representation at the European Association of Palliative Care conference (2019) 22nd-25thMay 2019 and our Clinical lead Dr. Elizabeth Namukwaya received a scholarship from the International Association of Hospice and Palliative Care (IAHPC) to attend the conference in Berlin. Several presentations were given on the work of the team in Uganda including the following:
Working with the refugee communities in Northern Uganda
Uganda is host to over a million refugees and is aligning health sector and refugee health planning. Working with our partners Cairdeas International Palliative care Trust and Peace Hospice Adjumani we have completed a project on Integration of palliative care into health care provision for South Sudanese refugees in Adjumani District, Uganda through a grant from THET. Through this project we have been able to establish baseline needs through a Rapid Systems Appraisal and household needs assessment which was then followed by a training programme to build capacity for effective planning for chronic disease and palliative care integration. This has included mobilization and training of VHTs to identify, support and patients living with chronic diseases in the refugee communities and training for family carer givers as well. We are sharing the results of this project both locally and internationally and we have just won a prize for the best poster at the EAPC conference May 2019.
Our partner Peace Hospice in Adjumani says……..
“Am not only a palliative care specialist, but an advocate, researcher, presenter, trainer, mentor, a coach, multi skilled person due to this project which makes me feel ‘’ I am an international figure’ ’what amazing gift in only one years’ time" Vicky Opia, Peace Hospice Adjumani
Sharing knowledge through Education and training
Hosting clinical placements is part of our Education and training programme, we host students from Makerere University and other universities in Uganda, Institute of Hospice and Palliative care and from other countries from within Africa and beyond who come to learn from us.
Cate Nakibuka a student on the Bsc. Palliative care leaves us with a word of encouragement after her 4 week placement with the team.
“I am grateful for working with the Palliative care team of Makerere/Mulago. You are very social, we shared a lot with you and when I had my social issues you counselled me nicely. You have taught me how to manage complex pain, I have learnt the skills in therapeutic communication and breaking of bad news to patients and families and I hope to pass on this knowledge to others. May God bless you”
Thank you for reading, please look out for more updates about our work in October!
“Transforming lives, changing systems and bringing hope”
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