Physical Health Uganda Project #38867

Bringing Hope Through Palliative Care in Uganda

by Palliative Care Education and Research Consortium

Project Report | Mar 1, 2021
February Update from PcERC

By Grace Kivumbi | Project Administrator

Visiting AO

Dear friends,

Happy New Year greetings to you all and we hope and pray that you and your families are still keeping well and safe.

Thank you for your continued support of our work, we are glad that our service has continued and that we are delighted to bring you some updates from the last few months.

1. Patient and family care

In this period (November - January) the team has provided care; pain relief, treating for symptoms as well as social, psychological, spiritual and practical support to a total of 236 patients and families. With 225 physical contacts within Mulago Hospital, Uganda Cancer Institute and Kiruddu Hospital and over 191 contacts over the telephone where we follow up and are also able to provide bereavement support to families of the deceased. While 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.

Below we share with you some of the cases that we have care for;

AO is a 35-year-old male security guard diagnosed with a myeloblastoma and admitted to the Cancer Institute Ward. He was referred to the palliative care team by the ward team due to his overwhelming pain which made him uncomfortable with sleepless nights. Our team provided pain control by giving him morphine. The volunteers visited him regularly and supported him by listening to his worries and concerns and helped with his practical needs such as; collecting medications from the pharmacies, giving information to the families on how he should take his drugs etc.

His main worries were the fungating and smelly tumor associated with overwhelming pain that was unbearable and uncomfortable and made it difficult for him to sleep at night, not being able to work and support his wife and his three children with basic needs such as food and school fees, as the main bread winner of the family.

He always looked forward to the visits from the volunteers who had become his regular visitors, their gentle touch on his shoulders and at times handshakes to which he says he was surprised other people could not do because of his fungating tumour and often smiled back when we smiled at him even when he seemed weak.

He was started on palliative chemotherapy which led to a reduction in the size of his Fungating tumour and his foul smell was no more and he had this to say as he was leaving.

“Thank you for your great generosity love and care you where God sent and able to bring joy and make me smile again”.

Smiling through my brokenness

“…My biggest consolation in grief and life is to have fulfilled the wishes of my child. As he approached death during the last three weeks after his terminal diagnosis, I do not have questions and I know, how lucky I was when my beloved son was on his death bed and I met this unique and special palliative care team. It was a very trying moment for us as a family knowing that it was obvious our son was dying. My greatest assurance was that we were able to meet his needs which included emotional, physical, and spiritual and being available to say good bye to him when he breathed his last. Thanks to your team that was available to walk with us the difficult journey - you all become part of our family. I have met families who did not have this and they tell me they will never recover and, knowing what RF’s death means to me, I believe them. (A bereaved mother a month after the loss of a beloved son).

2. Education and Training

We have not had a lot of training since our last report as the students have been on vacation. However, institutions have now been allowed to start teaching again from 1^st March with online teaching starting on the 8^th February 2021, thus the next period will be busy for the team with several groups of students to teach including;

Medical students from Makerere University: 8^th February - 23^rd March 2021 - 17 students each week.
Medical students from the Islamic University in Uganda for placement: 1^st February to end April 2021 - 7 students every week.
Research teaching for the BSc and complex pain – Institute of Hospice and Palliative Care at Hospice Africa Uganda: 25^th January, 22^nd and 23^rd February/
Paediatric training supported by Laura Case grant and the International Children’s Palliative Care Network (ICPCN): 22^nd -24^th February and 16^th-17^th March to be followed by mentoring for 6 months, we expect 40 participants.
Health Worker’s training for Obonyi district in conjunction with our partners Cairdeas IPCT and Peace Hospice Adjumani through a grant from DFID-UK during April-June and we expect 30 participants.
Medical students from Makerere University: February 15^th -18^th, we expect 65 students.
MMed internal medicine lectures (start date to be announced) and clinical placement: 1^st March to end April 2021.
MMed family Medicine: 1^st -30^th March 2021
We also expect to participate in the Masters in Palliative Care training at the Institute of Hospice and Palliative Care/Hospice Africa Uganda, this is scheduled for March.

It is therefore going to be a very busy but also very exciting period for the team for the opportunity to be able to support palliative care development so the services can reach those that need it.

We thank you for reading our updates and for your continuing support and we wish everyone and your families good health.

Thank you for reading and please look out for more in our next update report.

God bless you

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Nov 2, 2020
An update from PcERC

By Grace Kivumbi | Project Administrator

Volunteers Vicky & Vicky care for Nampija

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 20^thSeptember 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 7^th-9^th 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

7^th-8^th 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

Team attends the THET virtual conference

Our team demonstrating how to use PPE

SoPS developed for the COVID-19 pandemic

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Jul 7, 2020
Bringing Hope - Report from PcERC

By Grace Kivumbi | Project Administrator

Toko in a light moment with a patient

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;

Psychosocial support for people affected by the Covid-19 pandemic; 17^th April 2020
Cancer services in Uganda during Covid-19 – response; 24^thApril 2020
Recognizing and honouring all Palliative care providers that have contributed to the growth of the speciality in Uganda; take stock of achievements and also discuss on how to orient our advocacy for more gains with presenters included; Dr. Anne – who introduced palliative care in Uganda and also Founder of Hospice Africa Uganda (HAU) and this was in celebration of the International Labour day; 1^st May 2020
The right to Palliative care in Uganda, during the Covid-19 pandemic outbreak; 15^th May 2020
Palliative Care fraternity; Alumni Ethos discussion; 22^nd May 2020

On other forums we have participated;

Strategies to engage African communities to be proactive in the prevention of COVID-19; organised by the African Palliative Care Association (APCA), 28^th April 2020
Palliative care of COVID-19 patients in Low Resource settings with Dr. Mhoira; organised by ICMDA - 30^th April 2020
Where is God in a coronavirus world? Organized by ICMDA
Prof Julia has been involved in organising a series of 11 global weekly webinars on palliative care and COVID-19 organsied by the ICPCN, WHPCA, IAHPCA and PALCHASE and the development of Briefing Notes that go alongside these webinars.
SOURCE program ECHO project; 14^thMay & 2^nd June 2020
Reflections and Learnings from the COVID-19 Pandemic - The ISNCC Global Classroom - 4th June 2020

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

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