I am Toko Friday Santiago, the Volunteer Coordinator for the Palliative care Education and Research Consortium (PcERC) at Mulago Hospital, Uganda. 

I would like to thank Cairdeas Palliative Care Trust for giving me the opportunity to pursue a Bachelor’s Degree in Social work and Social Administration. Being able to excel with good grades without needing to do any retakes has been one of my greatest highlights and achievements since I began my studies. The course has been very interesting and encouraging to me in many ways. I have been able gain experience, improve my social work skills, and broaden my understanding and knowledge.

The course has also contributed to my development as a person through gaining analytical and practical skills and knowledge. This has helped me to make a difference in the lives of patients and their families at Mulago Hospital, especially those with life limiting illness.

Some of the challenges I have encountered include the expense of photocopying notes of all the lectures, and that transport keeps fluctuating during certain days especially during the rainy seasons.

However, since beginning my course I have built my confidence and assertiveness as a student leader in charge of the social work faculty. I also act as the Minister of Health within the Makere University Student Guild where I represent the students’ views and challenges and provide support during the class assessment presentations.

If you would like to support more scholarships like Ivan's, donate to our 2019 Christmas Appeal by visiting www.cairdeas.org.uk/get-involved/donate and selecting 'training scholarships' from the dropdown list. 

Ivan Onapito received a Cairdeas Scholarship to study a 2-year Masters in Practical Theology at Africa International University. In this blog, Ivan shares the story of how his scholarship came about and how his studies benefitted the work he was carrying out at the Makere Palliative Care Unit. If you would like to donate to support our training scholarships Christmas appeal, follow this link. 

At the beginning of 2011, I joined Makerere Palliative Care Unit as Volunteer Coordinator. This was a new role and I was tasked with setting up a team of volunteers to help in providing psychosocial and practical support to patients with life limiting illnesses, together with their families within Mulago Hospital and the Uganda Cancer Institute. This was after a needs assessment had been carried out showing a sizeable percentage of patients didn’t have these needs met. It was a daunting task, but due to the support of both internal and external mentors, we were able to get the programme up and running. My role later expanded to providing pastoral care to our patients.

The following year, we began having conversations about increasing my capacity through further studies. This would help in providing better care to our patients, create opportunities for research and also provide credibility for my role and our unit as a multi-disciplinary team.

Cairdeas graciously provided a scholarship for me to go and study a Masters in Practical Theology at Africa International University between 2013-2015. I was able to do a research on exploring the use of narratives as a tool in spiritual care for patients with life limiting illnesses. This research was presented at the Africa Palliative Conference in 2016 and the Global Seminar in Salzburg, Austria in 2016.

One of the benefits of this program was to make me even more aware of the need for capacity building among faith based leaders in areas of palliative care. I was involved in setting up a hospital ministry for my local church which we named ‘Sanyu’, meaning joy. We have established a good partnership with the community hospital and the volunteer team has grown to meet the spiritual and psychosocial needs of patients within the hospital.

For the past three years I have also been lecturing at Africa Renewal University, a Christian university training leaders and pastors to transform their communities. I teach practical theology courses, one of which is spiritual care for the sick. There is a great need to incorporate palliative care into theology programs so that even the furthest in the communities can have access to this care, have their holistic needs met and live with dignity even if they are dying. Cairdeas built my capacity through this scholarship. It was through this scholarship that I was able to get a teaching position at Africa Renewal University, and use the knowledge and skills acquired to train church leaders how they can be holistic in their care for the sick and vulnerable.

I hope to enroll for a PhD in Practical theology someday.

If you would like to support more scholarships like Ivan's, donate to our 2019 Christmas Appeal by visiting www.cairdeas.org.uk/get-involved/donate and selecting 'training scholarships' from the dropdown list. 

21 years after the first time I stepped into Kerala, India to attend the Indian Association Palliative Care conference I am back in beautiful Kerala. Little did I realise that this meeting with the team in Calicut with Drs Rajagopal, Suresh Kumar, Gayatri and Chitra would be the start of an incredible adventure personally and professionally. In these intervening years I have had the amazing privilege of working with colleagues who are now friends, and students who are now leaders. I have travelled to 17 states, eaten amazing food, negotiated trains, planes and autos and revelled in the wonderful fabrics, spices and colour. I have seen palliative care seeded and grown, met and worked with inspiring pioneers, dedicated volunteers and community members, inspiring young researchers and academics and more than a few elephants and rhinos!! I have watched the monsoon enfold and see the devastation of floods, I have floated on backwaters, swum in crashing waves, visited places of incredible history and culture and climbed majestic mountains. I have seen people suffering unimaginable poverty and pain and those who fight with compassion and determination to make a difference and not leave any person abandoned. I have seen the small daily miracles of costly love. I have visited, lived, loved, and felt part of this amazing country, subcontinent and people. Thank you, India, and to the many people I have had the joy of learning from and working alongside.

The IAPC conference has grown and developed having a different character each year as it moves from state to state, from north to south, east to west. Those of us attending over the years tend to date our experiences by saying ‘was that the year of Guwahati or Delhi…no it was Pune or Hyderabad’. This year, 10 years after I was in the Scientific Committee of the first Kochi conference, I was honoured to be back on the team, this time led by dear friend Prof Chitra Venteteswaran. The venue in the beautiful Aeli Hills, Aluva had strived hard to recover after the devastating floods of 2018 and the organising committee worked hard. The theme of the conference in Feb 2019 was ‘Voices in palliative care; ensuring quality, creating solutions’ and you can find the executive summary and abstracts including our presentations in the IJPC Special Supplement April-June 2019 Volume 25 | Issue 2 (Page Nos. 169-357). So many innovations from augmenting the voices of those with different abilities, LGBTQ, tribal settings, children, elderly, humanitarian settings and mental health. There were opportunities to discuss innovative multidisciplinary working, meet experts and discuss developments such as legal changes for end of life care, new definitions for palliative care and engage the media. 

It was a joy to have Cairdeas scholars Dr Peace Bagasha presenting her work on end stage renal disease and Ms Vicky from Adjumani and Peace Hospice sharing in a wonderful session on humanitarian settings… and we won 3 prizes along with Prof Julia Downing from PcERC/ICPCN!!! I shared work from Gaza and others the incredible impact the palliative care community in Kerala had in supporting those affected by the 2018 floods. IAPC central council have agreed to take this forward as a working group for India.

These south-south interactions give rich opportunities for mutual learning, exposure to an international forum and a chance for cultural exchange. Vicky has shared more in another post including our post-conference chill time by the Arabian sea. I will also share more about visits to Mizoram and updates from BCMCH.

Looking forward already to Feb 2020 when we reconvened back in Guwahati, Assam.