Many of our Uganda MPCU colleagues were able to particiate in this  groundbreaking conference with some supported by Cairdeas scholarships and an opportunity to share an information stall with our partners the Global Health Academy, Edinburgh and the International Children's Palliative Care Network. Mwazi Bautli is one of our longeststanding members of MPCU and has recently completed the nurse leadership fellowship. She was involved in the planning of the conference as well as participating and shares her experiencce in this blog.

This was a joint international conference of cancer and palliative care. This was an exciting undertaking in which a government institution was working with a non-government institution. It was the 7th biennial Palliative Care Association of Uganda (PCAU) conference and Uganda Cancer Institute (UCI) celebrating 50 years of cancer care since its establishment. It was planned for 600 delegates but 500 delegates attended.This was a timely reflection on cancer in Uganda and palliative care together as the burden of cancer is increasing, this is so because most of our patients report late for treatment or are diagnosed in the late stages of their illness making palliative treatment and care the only option in their management in our resource limited setting. The theme of the conference was “United against cancer: Prevention to end of life care”. This was a two day meeting held on 24th and 25th August at Resort beach Munyonyo. It was preceded by a preconference symposium on breast cancer care. The first day ended with a grand Gala dinner for UCI @50 where several recognition awards were given to individuals who have contributed to both cancer care and palliative care including our very own Prof Julia.

I was privileged to be a member of the organising committee and more specifically on the scientific committee which comprised of 20 members drawn from UCI and other organisations providing care to patients with life limiting illnesses including MPCU. I was the secretary to this committee and i was responsible for taking record of the proceedings of all the deliberations of the meetings. This was very enriching as it gave me the opportunity to utilise different skills to be able to keep track of all the information. The same committee was not only tasked with reviewing the abstracts but also developing the conference program. This undertaking focused on evidence based practice as well as new innovations in cancer treatment and palliative care. A total of 118 abstracts were received and out of these 50 were accepted for oral presentation and out of these 29 were in cooperated into the conference program. While developing the program, names of prominent health care personalities kept coming up and I was eagerly waiting for the conference to happen so that I could interface with some of them. At the same conference, I was among the presenters on the track of Service provision. During this time I not only represented MPCU in general but also the nurse leadership fellows as the work I presented on the prospective study conducted to evaluate nurse opioid prescribers in Uganda.

While developing the conference program, this was not only exciting but it was also challenging as some members were involved in this assignment for the very first time. A criteria was developed to aide in the selection of the abstracts for both poster and oral presentations. During the conference I was able to interact with high profile persons both locally and internationally. During the 2nd day of the conference I celebrated my 54th birthday in a special way with more than 400 delegates singing for me. This was very exciting and I look forward to many more collaborative conferences.

This particular conference was very beneficial to me as an individual as it emphasised the importance of collaboration and networking. Further everyone has the capacity to significantly contribute to organisation of any activity regardless of their position and role in the healthcare system. This has further improved my confidence and communication skills both written and oral. This has also helped me make new friends. I have come to realise that when we come together much can be achieved through sharing of our expertise.'

All the conference presentations and posters will be available on our resources section.

It was great to have Dan (our operations director) and Felicity Knights and also Christine Whitehouse from Uganda Cancer Trust visit us in Uganda. They brought such a sense of energy and encouragement and helped to give us a real impetus for our Cairdeas work. John Saxton, a pre-med student from the USA was also visiting us and is preparing a video we can share soon. 

'My name is Felicity Knights and I am married to Dan (current Operations Director). Like Dan, I’m also a junior doctor, and together we’ve been friends of Cairdeas for more than five years and enjoyed sharing the journey. However, in July I had my first chance to actually meet the MPCU team and I loved it!

For me, one of the most exciting new developments is the new ‘Sanyu’ team that is supporting MPCU – Sanyu  means joy. This team are newly trained volunteers from Kampala’s Lugogo Baptist Church, who are going to act as a community-based support team for palliative patients as they are discharged. MPCU’s volunteers are already an essential part of the team: giving practical, psychosocial, spiritual and practical support to patients and their families in Mulago, Kiruddu and Kawempe hospitals. The Sanyu team will help to extend care and pastoral and social support for patients holistically in their home setting.

Joy with the pigs....It was a highlight of the trip to visit the new pig farm project which has been initiated to try to provide a sustainable source of funds for the Sanyu team and the wider volunteer team. The project aims to breed and sell pigs, and all of the profits will go towards supporting the volunteer pprogramem as well as build capacity for incoem generation.  I’m a trustee of another charity working in Uganda, Afrinspire http://www.afrinspire.org.uk/ who have offered some advice on this piggery, and in this role I have had the opportunity to visit a number of different agricultural and farming projects. So one of the things that really struck me about this particular farm was the dedication of the Farm’s caretaker (Senga), and MPCU volunteer, Toko, who has been overseeing the implementation of the project. Both were clearly determined to make the piggery a success, and believed strongly in the value of the project to support the Sanyu team in the work they are doing for MPCU. Senga shared with us that she saw caring for the pigs as God’s work, and that her faith was the thing that was driving all her actions.

Piggeries are actually one of the most rapidly-growing sectors of farming in Uganda at the moment, but setting one up is not without its trials! Unfortunately, the team have found themselves confronted with a number of challenges common to this sort of project: difficulties in finding land to farm, fluctuating prices of feed and breeding stock (in part due to Ugandan drought), and things just taking a lot longer to get started than originally hoped!

But it was wonderful to see where they have got to, and to discuss plans to take things to the next stage. One of the two piggery buildings was fully constructed, and we were able to see the four pigs inside: one boar and three sows, two of whom are currently pregnant, so it won’t be long till the first piglets come along! The next stages are likely to include completing the second building, purchasing some more sows, and starting growing food on the nearby land to help protect the project against the fluctuating food costs.

So it was a joy to learn about the Sanyu team and their piggery, and I’m very much looking forward to re-visiting and seeing the next stages come into fruition!'

Thanks Toko, Ivan, Grace and the whole volunteer and pig project team. We are doing this to enable us to care for more people in need and you already contribute so much.

Thanks also to UCT http://www.ugandacancer.org.uk/ who have been our main funder for this project. In particular Christine Whitehouse, has been such an amazing support for MPCU and for our Pig project in particular. Her business acumen has been invaluable with ongoing committment as well as the encouragment of visits from Micheal and Liz Minton who are trustees of UCT. Thanks...and looking forward to continue to being partners!!

You can get involved in supporting this project too by donating online through the Cairdeas website www.cairdeas.org.uk. Watch up for more updates and we will be offereing a chance to sponsor / buy your own pig soon. Some are already named...spot Catriona 
 

Thanks to Dr David Fearon who leads Cairdeas Sahara and has given us this update on an innovative and creative project in Mauritania which extends palliative care with an emphasis on community understanding, rural development and poverty alleviation.

'I am delighted to report the completion of a 12 month capacity building project in Mauritania. These activities were sponsored by Johnson & Johnson and managed by the Tropical Health and Education Trust (THET). The highlight for me was the multidisciplinary and international collaboration. Visitors represented France, Senegal, Switzerland, Uganda, UK and Sudan. It was especially nice to be able to host the country’s first palliative care training in Arabic during the visit by Dr Nahla Gafer and Dr Mohja Khair, Cairdeas friends from Sudan. I was relieved that their dialect of Arabic was easily understood, and it was wonderful how they identified so many similarities between these two countries of the Sahel, both in the environment and culture. I think they were jealous of our wonderful beaches!

Overall we training 75 health care workers from all over the country in the foundations of palliative care, and we visited nine of these participants for mentoring in their rural work setting. To gve an example one nurse said 'I was caring for an elderly man with cardiac failure. He had multiple pressure sores and dirty sheets. He was depressed. I dressed the pressure sores and showed the family how to do the same, in employing what he learnt during the training. I could see how I made a positive change in this man’s life and that of his family. The patient remained well until his death. I never say ‘there is nothing more that can be done’ anymore.” 

At the moment, I am working with a French anthropologist on writing up the research which ran alongside the project. Unfortunately this means reading and rereading through the French transcripts of nine focus group meetings and 31 individual interviews. Eventually, we plan to publish two articles from this research. The first will be an anthropological reflection on the training and the effects of the training, and the second a discussion on the cultural ideas of death, dying and end of life care. I am already finding some good insights into how the concept of palliative care is viewed locally. For example, the definition of palliative care is centred around the idea of ‘life-limiting illness’ however this is a new concept for many Mauritanians, including health care workers. As one imam said : ‘it is not the illness which causes death, and it is not health which causes life’. In Mauritania, people believe that it is only God who is in control of life, health and death. A doctor or nurse who talks of an incurable disease may be considered as putting themselves in the position of God, or they may just not be aware of the available cure. Another aspect is that life is thought of as fragile and that most people have experienced suddenly losing a healthy member of their family, even while a severely ill family member makes a full recovery. Whilst we may think that these beliefs may lead to a fatalistic acceptance, in practice people feel a great burden to pursue any possible cure, whether through modern health care or traditional. At times this leads the family into debt as they continue their search for a cure.' 

The THET website has also featured this project http://community.businessfightspoverty.org/profiles/blogs/john-paul-creating-responsive-not-prescriptive-global-health. This shows how we can partner to make a real difference...many thanks to all our Mauritanian and international partners and to Johnson & Johnson and THET for their grant..