Sep 9, 2019

Update from PcERC

Toko hands over a donation of crutches
Toko hands over a donation of crutches

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 darkesmoment 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; 

  1. Uganda Cancer Institute & Palliative care Association of Uganda biennual conference; 5-6 September 2019, Kampala, Uganda
  2. ESACOP conference, 5-7 September 2019, Lusaka, Zambia
  3. African Palliative Care Association conference, 17-20 September, Kigali, Rwanda
  4. THET conference 25-26 September 2019, London, United Kingdom 

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; 

  • 30 Students from the Institute of Hospice and Palliative care in the modules of research and complex symptoms. 
  • 100 medical students from Makerere University; 82 of whom have come to the team for a 1-week rotation each. 
  • 4 Post graduate students from Family Medicine and Internal Medicine, 2 of them are currently on a 4-week placement.           

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”

Dr. Chimwemwe Kabaghe from Malawi
Dr. Chimwemwe Kabaghe from Malawi
Jun 10, 2019

Bringing Hope - Report from PcERC

One of our volunteers supporting a patient
One of our volunteers supporting a patient

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:

  • Shaping Integrated Palliative care;  Impact of a 6 year strategy in Makerere and Mulago Palliative care Unit, National referral hospital and Academic setting in Uganda  
  • Integration of Palliative care into Healthcare provision for South Sudanese Refugees in Adjumani District, Uganda; A rapid systems appraisal evaluation
  • Development, implementation and Evaluation of Palliative care Education for Health care workers, Village Health teams and family care givers providing Health care for South Sudanese Refugees in Adjumani district, Uganda 
  • Evaluation of nurse precribing in palliative care in Uganda: Shaping the future for Global Palliative Care

 

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”

Dr Elizabeth Namukwaya at EAPC with Dr Mhoira Leng
Dr Elizabeth Namukwaya at EAPC with Dr Mhoira Leng
 
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