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..

The EAPC World Congress 18th to 20th May in Madrid was a great event encompassing cutting edge education and research, networking, social interaction, meeting and renewing colleagues and friends, presenting our work and being inspired. It was so good that Dr Jack Turyahikayo was awarded an IAHPC Travelling Fellowship to attend and he shares more below...along with Dr Lucy Robinson who volunteered with us last year. We were presenting work which included a reveiw of our research capacity and I will write more of this in another blog.   

All our posters and presentatons will be in our website folder under EAPC. We were very honoured to accept an award for Leadership led by Julia Downing and with Liz Grant which and recognised the amazing Leadership Fellowship for Nurses completed recently with the University of Edinburgh, Makerere University and PCAU. Great to also see one of our Cairdeas Trustees ; Hamilton Inbadas and see Dr Lungagowda from Kidwai in Banaglore accept a pprze. So good to share with our Malawi friends (Jane Bates) and Sudanese (led by Dr Nahla Gafer). We shared in the launch of the Atlas for Palliative Care in the Middle East and Africa; again these will be available in our Resources section very soon. It was so good to see the interest in refugee and migrant health and many many new ideas going forward.

Jack says: 'The EAPC congress 2017 will always remain such a memorable one for me. This was the biggest congress that I have attended with over 2000 participants from various countries. Presenting work on “Outcomes of care among patients referred for specialist palliative care in Mulago hospital” allowed me interact, share knowledge and practices with the greatest researchers in palliative care. I enjoyed the numerous poster and oral presentations which immensely positively impacted my research knowledge and skills. Many palliative care researchers were pleased with the work presented and stimulated ideas to better my PhD research that I intend to undertake. I was inspired to have more impressive work at the next EAPC congress in Berlin. It was such a pleasure that as a team, three of our posters presented emerged among the best in the various categories.

Touring Madrid City showed me the wonders of living in Madrid. The late dinning night life with thousands of people walking and touring was such an interesting experience for me. The Santiago Bernabeu stadium that I have always watched on TV has an amazing history in club football. It was joyous to visit this stadium seeing several trophies and accolades won by the greatest soccer players in club football. I also posed and lifted the most recent Champions league trophy won by Real Madrid. I particularly enjoyed Spanish food served as Tapas. The sea foods including squid, prawns, octopus and cray fish are all tasty dishes that left me mesmerized and wondering if I could find similar dishes back in Uganda.  

Barcelona city was such a lovely and memorable experience for me too. The amazing architectural designs of the buildings were such a wonder to see. The Basilica Sagrada Familia by Gaudi marked by artistic sculptures of the Holy Family was the most beautiful cathedral I have seen. Park Guell overlying Barcelona city allows for an awesome view of most of the city. There was also a lot to learn about Gaudi`s work from this same place. The long walk along the La Rambla Street viewing many touristic places and spending time at the Barcelona beach was historical for me. I will always treasure these moments.

I also spent time at the University of Barcelona and learnt so much about its history. Visiting the Institute Catalagia Oncologia(ICO) that provides cancer care allowed me witness firsthand how patients with cancer are managed. I was able to see how chemotherapy is reconstituted and packaged by two robots supported by pharmacy technicians. I visited the palliative care team in this hospital which provides highly specialized services to patients and was pleased to see how it efficiently provides care to over 1000 patients a year. I easily appreciated the different contexts in which we all provide the much needed care to our patients.

I appreciate everyone who made it possible for me to have such a wonderful and unforgettable experience at the EAPC congress in Spain. Special mention goes to Dr Mhoira Leng who ensured that my stay in Spain was historical. I pray that God continues to provide the resources needed to thrust palliative care forward.'

Lucy adds her perspective: 'I am a doctor from the UK who volunteered with Cairdeas last summer at Makerere Palliative Care Unit (MPCU) in Kampala, Uganda. It was a challenging but enriching experience for myself and my partner John to give up our comfortable lives in Newcastle and travel to Africa. It really changed the way we look at life and work and we had some great experiences that we will remember for ever and met many inspiring people.

As part of this placement, myself and another volunteer, Dr Bex Cordner, undertook a project into research capacity building with the expert supervision and guidance of Dr Mhoira Leng, the Medical Director of Cairdeas, and her colleagues Dr Liz Namukwaya, Professor Scott Murray, Dr Liz Grant and Professor Julia Downing. Since MPCU was founded they have included research and evidence based practice as a core part of their academic Palliative Care Unit and have promoted a culture of research where everyone, from doctors to volunteers are encouraged to take part. This research provides evidence with which to deliver high quality Palliative Care in this setting and also helps the Unit to both achieve its strategic plan and measure its outcomes.

Our project, which I presented at EAPC in Madrid aimed to evaluate and measure the outcomes of this research culture and research capacity building through training. The study showed excellent results, with a large number of MPCU abstracts being presented at national and international conferences and positive outcomes from the research training delivered by MPCU.

The rest of the conference was incredibly interesting with a large amount of high quality studies into different aspects of Palliative Care being presented. It was a privilege to learn from these presentations and meet some of the people who are carrying out this important work. I found myself considering in more detail aspects of palliative care which I had not before, such as compassionate communities, managing frailty as part of palliative care and the health economics of this specialty.

Madrid itself was beautiful and Mhoira, Jack, Nasur (from Hospice Africa Uganda) and I spent a very enjoyable afternoon, after the conference, exploring. We marvelled at the stunning architecture, ordered way too many churros and accidentally joined a Spanish political demonstration!'

Many thanks to Cairdeas , IAHPC and THET for the financial support to allow us to attend and to all our wonderful colleagues who shared, inspired, laughed...but above all work for the development of palliative care, the relief of needless suffering and narrowing the health  care inequity gap.

Integrating palliative care into health systems is a global need and we are privileged to develop and evaluate models in a government hospital setting. We have pioneered the use of trained focal persons sometimes called link nurses (though they are not all nurses) who are trained and mentored to identify and manage palliative care problems at ward level. They cover areas such as surgical, burns unit, HIV, sickle cell clinics as well as oncology, gynaecology and medicine. We have evaluated and published this work and now extending it to 11 other settings here in Uganda but also in Rwanda and India. 
A long time supporter and now new Trustee of Cairdeas visited and met many of our link nurses and shares her experience

'Ten Years on .... One afternoon in December 2006 whilst on holiday in South India, I sat listening to Mhoira and Dr Rajagopal explore ideas of how best to improve standards of palliative care in South India.  Cairdeas was then in its infancy – a tiny charity with a global vision. Ten years later, I have just returned from a brief visit to Uganda where, from its base in Kampala, the work of Cairdeas now extends to Sudan, Mauritania and Gaza.

Highlights of my trip included meeting some of the enthusiastic and inspirational team based at Mulago Hospital – Loy who works in a paediatric ward where almost one hundred children are cared for sometimes by only two nurses – Josephine who although old enough to be retired, enthusiastically keeps working to train and mentor link nurses on the community training programme – Georgina who came into the hospital on her day off, just so that I could have some time hearing about her work – and these are only a few!

Behind the scenes is a committed group of professionals who administer, train, mentor, evaluate, audit, conduct evidence based research, all of which provides accountability and credibility to the work being done. I was conscious of the vast amount of time devoted to the on-going search for funding and the endless application forms which need to be completed. Travel is an integral part of any global project and I was very aware of the personal cost to those who live itinerant lives – attending conferences and training events, organising groups of representatives, arranging transport, estimating expenditure, ‘keeping the show on the road’, whilst still somehow finding the energy needed to inspire others and ‘grow’ the project.

The team of the link-nurse programme struck me as a group who work very hard . . . but also know how to play (could ‘the boss’ have anything to do with this?). There was lots of fun and laughter, combined with a sense of respecting and valuing  each other which to me indicated their learning in palliative care has become integral to the people they now are.  As one nurse said to me, ‘we are changed’. The experiences of the most vulnerable human beings have changed because the approach and attitude of those looking after them has changed – what a privilege to be in any way involved in such a process!

Thanks Joyce...Alice has also interviewed several nurses trained more recently as well as their mentor Florence and asked them about their experience.

'Hello, I’m called Florence. I have worked with the MPCU for seven years, but have been working in Palliative Care for seventeen years. I am now based in the medical wards at Kirrudu National Referral Hospital, seeing referrals in this 700 bed hospital, and also leading the Link Nurse programme. MPCU carried out a ‘needs assessment’ in 2011 that found that 45% of inpatients in our hospital had significant Palliative Care needs. Unfortunately, our team is limited in number and cannot see all of these patients individually. So we decided to train nurses on the wards, who are working more closely with the patients as ‘link nurses’. These are helping us by managing patients who have needs at level 1 [palliative care needs that can be met at ward level by all health and social care workers] and level 2 [palliative care needs that can be met at ward level by health and social care workers who have had additional training], offering them Palliative Care. They assess and manage the patients, but then alert their doctors and refer to us if the patient has more complex symptoms. Starting in Mulago Hospital it is now really helping here at Kirrudu Hospital, with nurses from outpatients on the first floor all the way to the dialysis unit on floor four being trained. Palliative Care is becoming integrated into practice on all our hospital wards.

We train each nurse through a process of teaching and mentoring, which is really enjoyable. We put them in class where they are taught by different members of the MPCU team, then they brainstorm how this works in their clinical practice and then a two day placement with us, where I work with them and take them through the practical part, demonstrating to them how to give morphine and assess a patient. We teach the basics in palliative care including: how to do an assessment of a patient to find out their needs, how to break bad news, how to communicate with the patients and their families and how to care for the terminally ill. This helps them to care for the patients they see on the wards, often with cancer or non-communicable diseases. It’s having a really good impact. As one person, I can’t see all the patients in the 700 bed hospital. But now we have twenty trained nurses. So they are the clinicians who can offer Palliative Care alongside the ward doctors to those patients who have basic needs, but link those with more complex needs to the MPCU team. They are bridging the gap. For example, I was being asked to see patients on the burns unit who were struggling with pain management. Now they know that they before changing dressings, they must give morphine to minimise procedural pain and this means I can focus on managing the patients with more complex palliative care needs.'

Thank you Florence, keep up the good work. Alice then spoke to two of our link nurses to find out how doing the training has changed their practice.

Irene Nassuuna, is a nursing officer working in Kirrudu Hospital currently leading the team in the outpatient department. 'I first heard about Palliative Care ten years ago when I was working at Nsambya hospital. But I didn’t understand what a difference it made. I thought it was only for cancer patients and patients who were just about to die. But I saw sister Florence was interested in much more than just cancer patients and morphine and so I started asking her more questions about Palliative Care and the link nurse programme. I found a young patient on my ward with liver cancer, but who was in a lot of pain. Following my training I was able to spend time explaining to her about her disease and with the ward doctor, started her on morphine. We also counselled the relatives who required more input at which point we referred to the MPCU team. I felt much more confident in managing this patient. It is really important to have more nurses trained in Palliative Care as it changes the attitude of the nurses to patients, draws them closer to patients and helps them think holistically.'

Jane Bujonjo, is a senior nursing officer, in charge of level 6 wards, neurology, endocrine and haematology wards. 'I learned so many things! It changed my attitude so I can communicate better with the caretakers and offer more support. On the wards, it has brought me closer to patients as I work find out what their individual needs are. There is always something we can do.'