Dear friends,
We once again bring you some updates about our work over the last few weeks, and we thank you for your contributions in whichever way; financially and through prayers. Covid-19 has brought many challenges but we are glad that we are able to continue to provide care to our patients and their families.
1. Patient and family care
Our clinical team together with the volunteers have cared for 230 patients and families since July by relieving their pain, treating their symptoms as well as providing social, psychological, spiritual and practical support. Whilst we have lost many of our patients, many of them on discharge are referred to a palliative care centre nearest to them for continuity of care.
We share with you a story of Nampijja (Not real name) who we cared for but unfortunately passed on a few weeks ago. She was a 30year old widow who was diagnosed with advanced squamous cell carcinoma of the right thigh and had had an amputation of the right leg. She also had HIV/AIDS and was on ART. She was a mother of 2 children, a boy 9 and girl 12 years who was her caregiver. She was abandoned by her family due to her sickness except her 2 children and her home was 400km away from Kampala. She was eventually admitted at the Cancer Institute solid tumor centre ward. The specialist palliative care team was then consulted to review her and to manage her uncontrolled pain and other symptoms. She presented with overwhelming pain, a huge fungating tumour, with a foul smelling discharge, and was unable to move out of the bed and could not even sit up. The only thing she could do by herself was feeding but the rest was done by her young daughter (toileting, bathing, picking of medicines…) and this was very distressing to her psychologically. We eventually controlled her physical pain with oral morphine and the foul smell was managed by the metronidazole powder (bought through our patient support/comfort fund supported by UCT-UK).
And she says “Thanks to the doctors and to the miracle medicines” as she put it.
Our volunteers made follow up visits regularly since she didn’t have any family who visited her for all the time she had spent in the hospital accept for a friend would come in occasionally. We established a good rapport with her and the caregiver (child daughter) and became so close that they were able to open up to us, share their main distresses, fears and concerns.
We found out that she was psychologically distressed because not even her own mother was willing to come and take care of her and the fact that her main caregiver was her young child, her son was left alone in the house but also the fact that they were not going to school. This was a very complex situation seeing a child caregiver being involved in the nursing care such as dressing and cleaning her bedsores, cooking, washing her clothes to mention but a few. They didn’t have enough money to meet their basic needs, or even buy medicine that was not available in the hospital or do investigations as required by the doctors so the daughter kept on begging for money from well-wishers. Nampija also had fears of what would happen to her children if she died since their father had died earlier due to HIV/AIDS.
Her daughter also expressed psychological distress seeing many other patients who are very sick and occasionally die, feared that her mother may end up dying since she was becoming weaker and weaker. She desired to go back to school and the prayer she had was that her mother gets better so that they can go back home and meet the brother whom she missed a lot.
The volunteers continued visiting her and were able to address some of her issues by contacting some of her family members on the telephone and encouraging them to come and support her since it was overwhelming for the young child to continue with her care and support. We also liaised with the cancer institute social work department who helped in finding her a hostel where she would be accommodated with her child. She was so grateful to the palliative care staff and volunteers who visited her regularly and ensured that she was pain free and improved on her quality of life.
This is what she had to say as she was leaving the ward for home “Thank you for being my new family, caring, helping me and loving me as your own, whenever i see your team come I get encouraged, you bring me hope. You have showed me God’s love, unconditional love, may God grant you all that you desire. I now believe that God hears and answers my prayers. She was later discharged back home and the team continued to follow her up through phone calls and picking and sending her morphine for her pain management through a friend since she could not access palliative care services from her village for continuity of care. Unfortunately, her health deteriorated till she passed on last month 20thSeptember with her loved ones around her after our continued engagement with them - RIP Nampija
2. Conferences and research
We have been privileged to participate in several different conferences that have been taking place which has enhanced our knowledge and thus we have been able to integrate new learning to improve our services.
We participated in the European Association of Palliative Care (EAPC) online research conference 7th-9th October 2020. It was an online conference with participants from across the world. It was very well organised and a whole new experience for the team who attended. We thank the International Association of Hospice and Palliative care (IAHPC) & the International Children Palliative Care Network (ICPCN) who supported some of our team to participate in this conference. It was also great that some of our work was presented at the virtual conference, for example our study looking at childrens understanding of illness, death and dying.
We take a quote from one of the attendees;
……I hope to incorporate some of the information obtained at this conference e.g use of patient reported outcomes to assess our impact on patient care and this information will be used in our advocacy for palliative care services with policy makers. The information got on palliative care in the COVID-19 response will be used to advocate for having more integration of palliative care in our COVID-19 response in Uganda. In Uganda several institutions are trying to integrate palliative care in their care and I am a member of a consultancy team that will advise on integration of palliative care in one national institution and the information I got from the session on Integration of specialist palliative care session is timely and will be used to advise the Institution…”
This year the Tropical Health Education Trust (THET) annual conference was held virtually on the 1ts and 2nd Oct and the 5th and 6th. We thank our international partner Cairdeas IPCT who supported our team to participate in this conference and it was great that some of our work in Adjumani with Peace Hospice was presented at the conference.
“….as a palliative care clinician I appreciated many of the sessions that were shared and noted that world over there are challenges and a session on overcoming challenges in service delivery was very enlightening. I must say that all sessions were very relevant and informative, especially integrated and health partnership model, quality improvement, use of digital technology, power dynamics, to mention but a few...”
We all thank our friends who enabled us attend the Palliative Care Works (PCW) conference on October 24, 2020 with the theme “unprecedented times –Global palliative care more relevant than ever times of Covid 19
3. #Hatson4CPC and World Hospice and Palliative Care Day celebrations,
We have also participated in the celebrations of two global palliative care days. 'Hats on foru Children's Palliative Care' took place on the 9th October and our team put on hats, took selfies and posted them on social media to help raise awareness for the need for children's palliative care. Then the 10th October was World Hospice and Palliative Care day with live online discussions, TVs shows amongst the Palliative care fraternity and a showcase of the different organisations that provide Palliative care services in the country supported by the Palliative Care Association of Uganda (PCAU) and the African Palliative Care Association (APCA), with the overall them of “ My care…My comfort”
4.Training/Workshops
7th-8th September, we were delighted to participate in a workshop on; Capacity Building for hospices and Palliative Care Organizations during COVID - 19 Response organized by the Ministry of Health Uganda and the Palliative Care Association of Uganda with a theme “A reflection and Sensitization of Palliative Care Health Workers”
The objectives of this workshop were to share; Share an update on current SOPs for Infection Prevention and Control (IPC) in response to COVID-19, to equip hospices and Palliative Care Organizations with infection protection control knowledge and skills and discuss mental health and Psychosocial support during COVID-19.
5. University teaching and exams
Following the presidential directive to reopen all medical schools after the Covid-19 closure, we have resumed training and examination of MMed students and their clinical exams for the current semester are now completed.
We thank you for reading our updates and for your continuous support, this will probably be our last one in the year, so we wish you all a very merry x-mas and a happy new year! We are privileged to have you as our supporters and partners, we wouldn’t have made it without you and our patients are in a better place. Please look out for more in our next updates report.
#Stay safe #God bless you
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”
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