– Simon Maku, clinical officer, volunteering in Peace Hospice Adjumani (PEACHOA), Uganda.

This was the first time Simon Maku ever completed a Needs Assessment, a type of data collection tool to determine the exact medical and social conditions of those living with palliative care needs in a certain area. It was also my first Needs Assessment in rural Northern Uganda, and I learned quite a bit with the traveling medical team and community-based Village Health Teams (VHTs). 

Our traveling team of five included Dr Mhoira Leng, in addition to Vicky Opia, Godfrey Oziti and Simon Maku from PEACHOA, and Toko Friday and myself from the Palliative care Education and Research Consortium (PcERC). We were very happy to work with a team of thirteen VHT mentors and VHTs, who connected us to each individual and family and often served as translators. 

You might be wondering what is involved in a Needs Assessment? Of course, we are to collect data, but there’s something to be said on how it is completed and its connection to the bigger picture of developing quality palliative care for all. Our recent one was in Obongi district of Northern Uganda from the 5th to 8th of January when it was not too hot (nor rainy). 

The data collection work started weeks in advance with the support from our administrative teams and Godfrey, who did an excellent job coordinating the VHT Mentors and VHTs. From our records, in some three villages in Obongi district (Dama, Bongilo, and Pasu), there was 126 individuals identified in advance by the VHT Mentors and VHTs with possible palliative care needs. With much teamwork and effort, we visited 117 of these individuals in their own homes.

Let me just pause for a moment: over a 4-day period we met and screened 117 people (almost 30 a day!) for palliative care needs. And even if they did not have a chronic, serious illness, we always took a moment to listen and counsel, share medical advice, and perhaps write a referral to a nearby health centre for further investigations and care. Those who did have palliative care needs were given a more detailed assessment, often with a lot of translation support, and some 81 individuals were then recruited to the Needs Assessment study.

Yet this was more than “a study,” I felt many times during the trip, this was getting to know each individual as a person, not a patient. Some spoke about their children who have died, or their husbands out of country. Others did not speak much but created beauty with artwork on the walls and maintaining beautiful, trimmed hedges around their home that spoke of better times. There was also a lack of food (tight rations) and eating one meal a day could be struggle. 

One particular gentleman I visited with Toko Friday was a retired teacher from South Sudan. In addition to having cancer of the throat, he had others issues with his refugee status, which greatly affected the care he could receive at local and national health centres. Thankfully our team was to connect with those who handle refugee statuses as well as look into what kind of oncology support that he could receive, and we know that the VHT Mentors and VHTs will continue to liaise with and support him.

I found the Needs Assessment trip to be the bridge between the deep connection of humanity and suffering and the call for health system changes. 

One moment, we were meeting one-on-one with someone like the retired teacher who had many levels of need but couldn’t stop smiling and cracking a joke or two about oncology doctors, while other times we sat with worried family, who had many questions for us, including inquiries about getting a wheelchair for their child who has a complex disability.

We saw the needs in the data collection even: initial findings report that a third had neurological conditions (acquired brain injury, complex and learning disabilities, Parkinson’s, etc.) with many others live with HIV/AIDS and musculoskeletal or chronic pain. These serious, chronic illnesses took a toll on the individual and their family, with high levels of distress reported, as well as the inability to work or perform daily tasks.

Our advocacy has begun to make palliative care as common as malaria. Even during our trip, we shared our Needs Assessment work and initial findings with the Obongi District Health Official (DHO) Mr Dominic Lomurecu.

Mr Lomurecu was already aware of and supported our activities, recognising the need for quality, accessible palliative care in Obongi district. He was in favour for more training of palliative care in Northern Uganda, which included communicating to other stakeholders about the unmet needs and how we all can integrate palliative care in all the health services. 

Readily identified and accessible care, with widespread education and desensitisation from the healthcare workers to VHTs to the family caregivers, is a global palliative care need. Just as outbreaks of malaria demand a response from various organisations – i.e., to control the mosquito population, provide care for the ill, and educate the community – so does the need for palliative care must be met by many stakeholders in multiple levels.

And our time of Needs Assessment in places like Bongilo, Dama, and Pasu villages in Northern Uganda did confirm quite several unmet palliative care and psychosocial needs. 

Please stay tuned for further updates in this work of creating quality, accessible palliative care. We will be sharing more blogs soon about the VHT Mentors and VHTs and how it is to live in fragile setting with palliative care needs. 

For almost two decades, Cairdeas has endeavoured to support quality, accessible palliative care in resource-limited areas around the world. Cairdeas began with friends and colleagues in 2005 and soon grew to hold a mutual vision to work alongside existing and emerging palliative care services:

• supporting education, training and curriculum development
• offering specific clinical expertise, such as mentoring and service design
• and, raising the profile of palliative care needs.

A Scottish Gaelic word, “Cairdeas” means worldwide friendship, and in this year of 2022 we couldn’t agree more. Our friends, colleagues, individual and organisational partners throughout the globe are foundational to our vision where palliative care is accessible by all.

We thank you for your giving of time, talents, and resources over the years. From the recent difficulties of navigating the COVID-19 pandemic to the milestones of beginning the Cairdeas mission, expanding to places like India, Uganda, the Sahara and Gaza, we have been grateful to walk step by step alongside you. 

We also celebrate our achievements together in providing excellent palliative care for all. From our early years of mutual growth of Pallium India and Christian Medical College, Vellore, to the leadership development of a new palliative care unit in Mulago Hospital and Makerere University in Kampala, Uganda (MPCU), we are honoured and proud of the progress we have made together.

This year, as MPCU makes 14 years of service and now operates in both Mulago and Kiruddu Hospitals, we are also partnering with the Islamic University in Gaza to establish a diploma programme for palliative care. (More information to come!)

We are thankful for what we have accomplished together and are eager to see what the next years have in store. We invite you to draw close and interact in this journey of quality palliative care for all, as we suggest the following:

Stay connected to new happenings. You can register to be notified of new blogs or follow our social media pages on Facebook and Twitter. 

Purchase picturesque calendars. For those in the UK only – limited time only – Stewart Kerr has offered beautiful sceneries of Scotland, with all proceeds going to Cairdeas.

Stewart shared:

I am fundraising again this year for Cairdeas International Palliative Care Trust with a new Scottish landscape calendar for 2023. The format is the same as last year. They are A3 in size (297 x 420 mm) on 250gsm coated stock. They are available at £14 each plus £2.50 UK postage if required (plus any additional donation you care to make) with ALL money going to Cairdeas. 

If you would like to order any, please just get in touch either directly or using the email below letting me know how many you would like and an address if you would like them posted … Email: calendars@stewartkerr.com

Shop online and give to Cairdeas. Register on Amazon Smile, Give as You Live, or Easy Fundraising, where a percentage of your online purchases will automatically be donated to us.

Consider volunteering with partners, PallCHASE or PcERC. Simply send a quick email to our global partner PallCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies) or to PcERC (Palliative care Education and Research Consortium) in Kampala, Uganda. 

Donate for long-lasting impact. Giving at Cairdeas goes towards building capacity for village health teams and healthcare workers, or you can contribute towards the Cairdeas Scholarships programme to sponsor a year-long diploma or three-year degree in palliative medicine. You can donate to Cairdeas directly or give to PcERC’s Global Giving page. 

Thank you for extending worldwide friendship and fellowship, Cairdeas, to the areas that need palliative care services the most. With each patient and family provided with holistic care and with every healthcare worker trained, we advance the mission to promote and facilitate the provision of high-quality palliative care to all.

With twenty-nine years of palliative care services in Uganda, World Hospice and Palliative Care Day (and the week leading up to it) was something to celebrate.

One notable event was a public lecture on palliative care, which was organised by the Ministry of Health (MOH) plus the Palliative Care Association of Uganda (PCAU) and facilitated at the Davis Lecture Hall (Makerere College of Health Sciences, Mulago Hospital). It was encouraging to see so many students and healthcare professionals, as well as the online attendees on Zoom, on the afternoon of Wednesday, 5th October. 

The team of Mulago Palliative Care Unit (MPCU)/Palliative care Education and Research Consortium (PcERC) was actively engaged in the public lecture. The team managed the registration table and handed out brochures and drinks. Both the team working in Kiruddu and Mulago Hospitals came for the event and were very proud to see their own Dr Liz Namukwaya present about the unit and sit in the Q&A panel.

Dr Liz Namukwaya spoke on the unit’s clinical activities, role in education, and extent of research. With an estimated 46% of patients admitted needing palliative care, the palliative unit alongside LINK nurses has served 12,520 patients since 2008. The unit has also trained over 3,500 students, from postgraduate and undergraduate doctors, nurses, pharmacists, to social workers. 

Several other doctors presented on palliative care; first, Dr Fredrick Nelson Nakwagala, the Clinical Head Directorate of Internal Medicine at Mulago Hospital, talked about non-malignant conditions requiring palliative care. He shared stories of breaking bad news and encouraged fellow healthcare professionals to see the patient as a person, not as their illness. Dr Peter Lwabi, the Deputy Executive Director of the Uganda Heart Institute, then addressed the interdisciplinary approach of palliative care and cardiology.

The keynote speaker Dr David Okello presented on community engagement for alleviating pain and suffering in palliative care patients. As the Executive Director at African Center for Global Health and Social Transformation, he shared about the effectiveness of community involvement in COVID-19 and how the community contributes to holistic care. 

The public lecture availed to much discussion among the Q&A panel and several remarks from palliative care leaders in attendance. The questions from the audience had to be cut short due to time, yet many were requesting for palliative care refresher trainings. Dr Anne Merriman, founder of Hospice Africa Uganda (HAU), gave some of the closing remarks as she reminded us to take care of the carers; that is, amid all the clinical activities, training, and research, we ought to care for ourselves and our colleagues.

World Hospice and Palliative Care Day (WHPCD) then was on Saturday, 8th October. The theme for this year was “Healing Hearts & Communities” which aligned well to the messages shared in the public lecture.

The palliative care unit of MPCU/PCERC was actively involved in the day’s events from the National Palliative Care Walk in the morning to the PCAU Palliative Care Fraternity football match. The unit contributed to the sponsorship of the day and assisted with the organisation, and they were glad to meet others who worked in palliative care across Uganda. The walk was about 4 km long, which started in the Mulago field/playground to Kamwokya (around Acacia Mall) and back again.

Liz Nabirye, the Clinical Lead of PcERC, noted that “it was a good health exercise and the first time to celebrate together since COVID. Later back at Mulago, we had speeches were made from the director of PCAU [Mark Mwesiga] and each palliative care organisation had time to talk about what they do.” She specifically recalls meeting other units from Masaka in western Uganda as well as Jinja (east-central), and they were able to share what services they offer and how they could refer patients to each other. “It was a unifying celebration for us, it was a palliative care fraternity,” Liz concluded.

This day of advocacy and awareness to palliative care was true to its theme, and healing hearts and the community involved a bit of fun! The team had practiced for weeks for this, and how it was finally here: a football match of representatives of the palliative care fraternity against members of the Ugandan Parliament. The two representatives from PcERC, Toko Friday and Bemustar, played well and tried their best. But in the end the parliamentarians wone the match, 6-3.

Nevertheless, PcERC was awarded a certificate of participation, and the team brought many good memories and new contacts from the day. “For me as the lead,” Liz Nabirye told me, “I would just say being a part of the events was a good thing to happen to our unit; we were able to create awareness, be represented, and be involved in the preparations. The week was for our advocacy … it raised visibility for palliative care services at the national referral hospitals.”