Bringing Hope Through Palliative Care in Uganda

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:

• 28^thOctober-1^st November: Paediatric training for hospital Pharmacists with 12 participants in attendance from Mulago National Referral Hospital and its sites, this is being followed by a 2-day placement with the team for hands on experience. Results of the course evaluations show significant increase in palliative care knowledge following this training. 
• 11^th-15^th November: Paediatric nurses training with 31 participants in attendance from Mulago National Refferal Hospital and its sites, this is being followed by ongoing mentorship and support from the Palliative Care Team. 
• 12^th-13^th September we held a training for 10 participants from around Kampala to be able to join our team of volunteers, this was conducted in partnership with Lugogo Baptist Church.
• 23^rd Sept – Our friends Dr. Michael and Liz Minton from Uganda Cancer Trust – UK (UCT-UK) paid us their annual visit and during this visit they held a one day update training for the volunteers from Mulago National Referral Hospital and Sanyu Ministry teams, 12 volunteers were in attendance, they also had ward rounds with volunteers.
• We have also had ongoing teaching for the Makerere University Year one MMed students throughout the semester and participated in their assessments and examinations. 

Placements: 

• 25^th September, we hosted 2 students on the International programs of Hospice Africa Uganda.
• 30^th September, students from the Mulago School of Nursing for 4 weeks
• 1^st-30^th November hosting 10 Diploma in Nursing students four 4 weeks,
• 25^th September, 14 4^th year students from the Islamic University of Uganda.
• Weesk 11th-15^th, 18^th-22^nd November, we had 4 3^rd year HSOs for their palliative care rotation 

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;

• Perception of Illness, death and dying by adult patients in Uganda with life limiting conditions; Prof. Julia Downing. 
• Exploring Palliative care professionals’ views on Illness, Death and Dying; Prof. Julia Downing 
• Exploring the understanding of illness, death and dying of Ugandan children with life-limiting conditions; Prof. Julia Downing
• Evaluating the Impact of the Ugandan Palliative Care Nurse Leadership Programme Eighteen Months Following Completion; Prof. Julia Downing
• Palliative care needs and outcomes of patients with Hepatocellular Carcinoma (HCC) in the Uganda Cancer Institute and Mulago National Referral Hospital. Ms. Florence Nalutaaya
• Bringing hope, changing systems, transforming lives; a 10 year review on the impact of integrated palliative care in the academic and national hospital setting in Uganda. Dr. Elizabeth Namukway
• An assessment of chronic illness and palliative care need in a south Sudanese refugee population within Uganda; Dr. Natalie Webber
• Diagnostic and Prognostic Awareness Amongst Caregivers and Women with Metastatic Breast Cancer in Kampala, Uganda: A Qualitative Analysis; Dr. Jack Turyahikayo
• Palliative care situational analysis in a South Sudanese refugee setting in Adjumani District, Uganda using a Participatory Rapid Systems Appraisal; Ms. Vicky Opia
• Development, Implementation and Evaluation of a palliative care education programme for Village Health Teams providing healthcare to South Sudanese Refugees in Adjumani District, Uganda. Ms. Vicky Opia

2. ESACOP conference, 5^th-7^th September 2019, Lusaka, Zambia; We were represented by Dr. Mhoira Leng.

3. 6^th International African Palliative Care Association conference, hosted by the Ministry of Health, Rwanda; 17^th-20^th 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; 

• Recommendations from an evaluation into nurse prescribing in palliative care in Uganda; Prof. Julia Downing
• Children’s understanding of illness, death and dying in Uganda; Prof. Julia Downing 
• Does health care professionals views on illness, death and dying impact on the PC that they give? Prof. Julia Downing
• What has been the impact of the Ugandan Palliative Care Nurse Leadership Programme eighteen months following completion; Prof. Julia Downing
• Bringing hope, changing systems, transforming lives; a 10 year review on the impact of integrated palliative care in the academic and national hospital setting in Uganda; Dr.Mhoira Leng
• Diagnostic and Prognostic Awareness Amongst Caregivers and Women with Metastatic Breast Cancer in Kampala, Uganda: A Qualitative Analysis; Dr. Jack Turyahikayo 

4. THET conference 25^th-26^th 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. 

•  Development, Implementation and Evaluation of Palliative, Care Education for Health Care Workers, Village Health, Teams and Family Caregivers Providing Healthcare for South Sudanese Refugees in Adjumani District, Uganda; Ms. Vicky Opia 
• Leaving no one behind – How knowledge of children’s understanding of illness, death and dying will impact on the provision of children’s palliative care in Uganda; Prof. Julia Downing

5. On the 3^rd 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”