Are healthcare professionals still able to gather in person to share ideas in this post COVID-19 world? With the appropriate precautions and flexible options for virtual or physical attendance, the African Palliative Care Association showed us that this is indeed possible with their 7th international conference themed “Palliative Care in a Pandemic.”

The APCA Conference 2022 was held from the 24th to 26th August at the beautiful méstil hotel located in Kampala, Uganda. Attendees came from all over the globe; Dr Mhoira Leng and Prof Julia Downing were able to attend in person, as well as Josephine Kabahweza, Liz Nabirye, Florence Nalutaaya, Dr Liz Namukwaya, and Toko Friday Santiago from MPCU/PcERC. It was a pleasure to see other Ugandan colleagues, like Vicky Opia from Peace Hospice Adjumani and Cathy Magoola from Kiruddu Hospital.

The conference encouraged participants like MPCU/PcERC social worker and volunteer coordinator Toko Friday Santiago, especially with discussions on advocacy for those in fragile settings with unmet palliative care needs. Toko shared that he has seen many refugee families in need, and those who are able to travel to Mulago Hospital in Kampala often do not have the funds to complete investigations, buy meals, or even travel back to their settlements. With advocacy for palliative care for all, we need to reach out to NGOs, the Ugandan government, and religious leaders. The conference spurred Toko to consider how to garner support to patients and families most in need at Kiruddu and Mulago Hospitals, and he hopes to present his methods and the challenges that the families and caregivers experience at the next APCA Conference.

A few of this year’s presentations came from our very own Cairdeas team and partners. Dr Mhoira Leng spoke about “Humanitarian settings and palliative care in Africa,” highlighting the significant burden of palliative care needs and chronic diseases, as well as high levels of mental distress, that affect the host and refugee populations in Northern Uganda. Dr Mhoira emphasised on ground-up, integrated palliative care in such fragile communities.

This presentation was complimented by Vicky Opia from Peace Hospice Adjumani as she discussed “Community Empowerment through Palliative care Education and Mentorship of Village Health Teams Providing Healthcare to South Sudanese Refugees in Adjumani and Obongi Districts, Uganda.” Prof Julia Downing also spoke during the conference, where she served as a chair to three panel discussions and presented on “Children’s palliative care in a pandemic.”

Then Florence Nalutaaya, a senior nurse from MPCU/PcERC, presented on “Empowering Health professionals through education and mentorship to improve children’s palliative care provision in Uganda,” where she shared the paediatric trainings and mentoring accomplished by the MPCU/PcERC team and sponsored by Laura Case Trust and ICPCN. Through the five day training and follow-up mentorship, they were able to equip 40 healthcare professionals and 2 counsellors with children’s palliative care training.

Dr Liz Namukwaya, also from the MPCU/PcERC team, spoke on “Palliative care needs of patients admitted to the emergency department of Kiruddu National Referral Hospital in Uganda” from a Yale University-sponsored research project. Dr Liz shared that in this research, they discovered needs for palliative care training in hospital emergency workers as well as a high level of holistic palliative care needs in the 100 surveyed patients.

Key takeaways were many with such an abundance of presenters and knowledge from around the world. MPCU/PcERC clinical lead Liz Nabirye reflected on many: the highlighted importance of palliative care approaches to grief and bereavement from the pandemic, integrating palliative care services into the health systems, and confronting misconceptions of palliative care in public healthcare. What stuck Liz the most though was “how we could use technology to increase access to palliative care, how we can cost effectively use technology. For example, in a setting when there are low resources, telephone calls or WhatsApp can be used to follow up with patients or make interdisciplinary consults.” She noted that the conference itself was both physical and virtual, showing us the flexibility and opportunities coming from the use of technology.

Florence Nalutaaya added that the pre- and post-conference workshops were also inspiring, and she was glad to exchange contacts with facilitators to further discussions. Both Liz and Florence highlighted research on sickle cell patients that could improve the pain and symptom management as well as provide evidence-based advocacy on the effective opioid use in those with sickle cell. 

When requested for any last words on the APCA Conference 2022, the MPCU/PcERC team were keen to speak of its praises. Nurse Josephine Kabahweza wrote that the conference was great; she “had a lot to learn from others, panel discussions and poster presentations” and thanked Cairdeas in particular for the sponsorship so they could attend. Toko Friday Santiago still remembers one of the opening sessions of the conference. “As we offer support to our patients and families, what is the main goal of our work?” Toko asked, and then quickly answered, “Of course, the main goal is to improve quality of life, and of course as we improve quality of life, we bring a smile to them and bring hope.”

Florence Nalutaaya then summarised the whole experience, declaring, “The conference was good, and it shouldn’t be missed: you share ideas, you get to know how to move around the potholes of patient and organisational management … you get new friends, old friends, and hear how they are exceling and how they are not doing well so you can encourage each other. Palliative care is for all, and we all should be the same, not leaving anyone behind.”

For those of you who don't know me, I am Cairdeas IPCT's finance officer. Normally I am looking after the Charity's accounts. However, tomorrow I'll be running in the Great North Run 2022 in memory of my son Peter, who died from a brain tumour when he was 15. In doing this crazy undertaking at my age, I'll be raising money and awareness of Cairdeas International Palliative Care Trust. If you'd like to read my story and more about the work of Cairdeas in the area of #palliativecare you can find it on my Just Giving Page. Here is the link https://www.justgiving.com/fundraising/ian-robinson73. Thanks everyone for your encouragement and support.

Best Regards

Ian Robinson

Our visiting doctor, Kathleen Mcgeough, who had been with us at Cairdeas for four months this year, shares some thoughts on the routine they built while volunteering in Uganda. She submitted this particular blog at the very beginning of her work with the Mulago Palliative Care Unit / Palliative care Education and Research Consortium. To hear more about our visiting doctors and their time in Uganda, visit the complete blogs at Kate Howorth and Kathleen Mcgeough. 

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The time my day starts depends on whether I am at Mulago Hospital (leave the house at 7:05) or Kiruddu Hospital (leave at 7:35).  We generally start the day by meeting with the clinical team in the morning to go through our list of patients and decide who needs seen. These patients are then divided between us (with a translator for Kate and I) and we start our reviews.  A large part of the job is assessing and trying to treat symptoms, but a large part is also discussing (sometimes more debating) with other doctors what our treatment priorities should be.  An example of this is on the renal wards.  We get a lot of referrals of patients who cannot afford dialysis; either they cannot afford to start it or it has been started but they can no longer afford to continue.

The cost of initiating dialysis is over £200 as patients have to pay for central line insertion, blood tests, medications and the actual dialysis.  This is more than the annual salary for many patients and many families face choosing between financial ruin and starting treatment.  We spend a lot of time on the renal unit discussing with the ward doctors what our treatment goals are; it is painful to hear that families have sold their homes and everything they own for 2 weeks- worth of dialysis before having to stop treatment and facing the inevitable deterioration from renal failure.  Instead we try to ensure that the ward doctors have frank and honest conversations with their patients and consider the benefits and risks on an individual basis.

We tend to finish our reviews and clerking new patients by the afternoon and try to beat the traffic on the way home.  Alongside the ward reviews we have been doing a lot of teaching. This has ranged from undergraduate to postgraduate teaching.  Thanks to zoom, we can often do these from home as most teaching has remained virtual.  As well as delivering lots of teaching there has been plenty opportunity for me to attend teaching. This has been either “mini rounds” where an interesting case is presented followed by teaching and discussion as well as journal club. 

The main week to week variation has been medical students.  We teach students from 2 different universities- one university sends a large group of students (currently 32!) to the unit for a block of 4 weeks while the other university sends a smaller group (8 students) on alternate weeks.  This makes a massive difference to the workload for the week; the weeks we have medical students involve a lot more bedside teaching and therefore slower ward reviews.  There is also the Friday PBL session which takes a good few hours going through 3 different cases- wish me luck doing that with a class of 40!  We have been lucky to have post-graduates rotate through the department, once they have been with us for a week or so they are able to work more independently and help share the work load. 

The weekly routine generally involves 3 days at Mulago and 2 days at Kiruddu- though this can change with public holidays, staff absences or when the case load is much greater in one hospital.  We have also managed some routine in our personal life.  Tuesday evening is yoga, Wednesday is Quiz night and we have tried to stick to a “Fun Friday” where we treat ourselves to a milkshake, cake or even a cocktail seeing as its Friday!  We try and go to the gym regularly, luckily it is walking distance so we tend to manage at least 3 times a week.

Generally the variation month to month has been dependent on medical students. March was an overwhelming month as we had a large group of students, GP trainees and internal medicine trainees whilst Kate and I where trying to find our feet with how things are done.  There was also loads of teaching that we delivered and attended.  April was slightly different, we did not have many medical students which made it easier to get stuck into clinical work and get to know our colleagues in both hospitals better.  In May we where lucky enough to travel to the North of Uganda to participate in some research, though I’ve already bored you with this in another post.

We have tried to make the most of being here and filled our weekends with adventures and activities.  Being away in Uganda for a longer period has meant we have been able to build up a network of friends outside of work and have started to feel like we have managed to build a bit of a life here.  Our colleagues have expressed how grateful they are for the extra woman-power but have also been keen for us to explore the Pearl of Africa and enjoy everything Uganda has to offer.  I have just had some annual leave travelling around Uganda, and it truly was amazing.  3 days back at work now and it’s like I’ve never been away… though there is something comforting about a routine.