Jul 7, 2020

Bringing Hope - Report from PcERC

Toko in a light moment with a patient
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; 17th April 2020
  • Cancer services in Uganda during Covid-19 – response; 24th April 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; 1st May 2020
  • The right to Palliative care in Uganda, during the Covid-19 pandemic outbreak; 15th May 2020 
  • Palliative Care fraternity; Alumni Ethos   discussion; 22nd 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), 28th April 2020 
  • Palliative care of COVID-19 patients in Low Resource settings with Dr. Mhoira; organised by ICMDA - 30th 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; 14thMay & 2nd 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

Mar 10, 2020

Bringing Hope - Update from PcERC

S before surgery
S before surgery

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. 

  • An assessment of Chronic illness and Palliative care needs in a South Sudanese refugee population within Uganda. Dr. Mhoira 
  • Palliative care needs and outcomes of patients with Hepatocellular carcinoma in the Uganda Cancer Institute (UCI) and Mulago National Referral hospital, Uganda; Prof. Julia on behalf of Florence 

            (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”

Toko supports S after a successful surgery
Toko supports S after a successful surgery
Prof. Julia  & Dr. Mhoira at IAPCON 20
Prof. Julia & Dr. Mhoira at IAPCON 20
Dec 9, 2019

Bringing Hope - Our Christmas Report

Teaching the nurses on paediatric palliative care
Teaching the nurses on paediatric palliative care

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:

  • 28thOctober-1st 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. 
  • 11th-15th 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. 
  • 12th-13th 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.
  • 23rd 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: 

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

  • 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 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. 

  •  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 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”

Teaching the pharmacists
Teaching the pharmacists
Natalie and Mwazi
Natalie and Mwazi
 
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