The 26^th International Conference of Indian Association of Palliative Care, or more commonly known as the IAPCON 2019, was held on 8^th to 10^th February this year in Kerala. The conference was a huge effort but also a major success, with over 1,000 people attending from 16 countries from around the world. The theme was ‘Voices, Ensuring Quality, Creating Solutions’. This allowed for a wide variety of speakers both national and international, from different disciplines within the palliative care family. This included perspectives from the ‘voiceless’, with excellent contributions from palliative psychiatry. Cairdeas India faculty lead, Chitra Venkateswaran specialises in palliative care and mental health and is now working for the Believers Church Medical Hospital as Head of Department for Psychiatry with a joint round in palliative care. You can read Chitra’s conference editorial at the Indian Journal of Palliative Care.

Cairdeas was represented at IAPCON2019 in several ways. Mhoira sat on the scientific committee, which worked hard to ensure a range of topics to cater for the multidisciplinary nature of palliative care. We presented in the main session, and abstracts were all well received. At the IAPC central council Mhoira submitted a proposal to begin a working group looking into palliative care in humanitarian settings in India. This seemed particularly significant due to the location of the conference in Kochi, where they recently suffered a devastating natural disaster in the form of floods. The proposal was approved by the committee, so we look forward to seeing how this working group progresses.

Cairdeas scholars Vicky Opia and Peace Bagasha performed incredibly well at the conference. They contributed to 3 parallel sessions, 3 posters and 3 oral presentations along with Julia Downing from the Uganda team. We were delighted to win 3 prizes for oral presentations. Peace also travelled to Hyderabad to review renal transplantation as part of her other roles. Vicky spent some time visiting Mehac and Kochi Government Hospital community programmes.

With over 1,000 people present at the conference, representatives from around the world and across the palliative care sector, and a wonderful display of Kerala culture, the future looks bright for palliative care in India.

Dr Dave Fearon leads the Cairdeas Sahara project which was established in 2014. The project is one of the first palliative care services in West Africa, where health workers are unfamiliar with even the basic principles of holistic palliative care. Often, pain and other burdensome symptoms are left ignored or even denied by health workers. Fortunately in recent years there have been huge strides in progress, particularly in pain management. Dave reports on the most recent step forward: access to morphine tablets. 

As many of you will know, severe pain is a common problem for people with life-limiting conditions anywhere in the world. It is no different here in the Sahara. The majority of our patients at Cairdeas Sahara in Mauritania have advanced cancer and pain. Thankfully we have a good working relationship with the national cancer centre where morphine is available. Up until recently it was only available in injection form or long-acting tablets, which was not ideal. There was no liquid or tablets which worked quickly, which are very useful when starting morphine and for ‘break through’ pain relief to use any time of day or night. We have been asking for this for several years, but it was not until a new director, oncologist and paediatrician Dr Benina, was appointed at the end of 2018 that we have seen change. We now have a short acting morphine tablet. She is not yet satisfied and is still pushing for an oral suspension or liquid form, especially for her young cancer patients.

We have recently been invited by the cancer centre to train the doctors on how to use these new tablets. In contrast to many countries where doctors are reluctant to prescribe morphine, here we have a different problem, the overuse of morphine injections. Several of our patients have been treated very liberally with morphine injections whenever they have attended the cancer centre. The doctor gives them a morphine injection for their pain. They really like these injections because they work very quickly (although the effects wear off quickly as well), and like many Mauritanians they think injections are more powerful than little tablets. 

The Cairdeas Sahara team are now working with five or six patients who are in this situation, of switching from the injections to the tablet format. NDiaye, the lead nurse is doing a great job and is being stretched in his communication skills. Importantly, the cancer doctors are fully supportive of our work and are now aware of how to start oral morphine. We can already seen the benefits for our patients.

You can find out more about the Cairdeas Sahara project here. 

Dr Peace Bagasha is the first renal physician and palliative care physician in Uganda. Peace writes below about a story of how she was able to bring hope to a young man with kidney disease in Uganda. 

I stood by his bedside in Kiruddu Refferal Hospital watching him struggle to breathe in and breathe out. I had seen him multiple times on many hospital admissions over the past 12months. He was barely 35, almost the same age as me, but this time was different. We would not be having the same conversation about life and options as we had had before. We would not even be having a verbal discussion this time round. I had said “hello” earlier and the most he could manage was a smile when he turned and recognized my face. He had no energy to reply beyond the smile, he was saving every breath to just breathe in and breathe out. 

In a way John was the exceptional one out of many of my end stage kidney disease patients. Fully aware of his personal financial situation, and having experienced the struggles of his older brother who was on dialysis, he had adamantly chosen not to even think about hemodialysis as an option. He chose from the very beginning maximum conservative management adamantly stating that “I cannot afford dialysis”.  

His family was seated around him fully aware that he had not many days or even hours left. He was not in pain. He was comfortable thanks to the care and support provided by the palliative care team.  

With no national health insurance coverage supporting renal care, in Uganda patients have to pay out of pocket for renal replacement treatment including hemodialysis and kidney transplant. Costs range from 500,000Ugshs per week for dialysis to 100millionUgshs for a kidney transplant abroad. This makes hemodialysis inaccessible for majority of Ugandans. Some try to sell property and assets but funds soon run out and poverty levels worsen. Conservative care is the forced option for most. 

With access to palliative care services provided by the palliative care team in Kiruddu, John and his family had the rare opportunity in Uganda to experience dignity and get holistic support at the end of life. Without financial support from people like you, many other Johns will not have an opportunity as special as this. 

#BringingHope. Donate here.