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.'

Great to hear from Dr Alice Grey who is spending 6 months with the MPCU team in Kampala (note you can click on the link above and receive regular notifications of new blogs)

'Are you sure you're ready for Africa? It's a bit different to southeast London' My consultant asked me as I headed off from my last A+E shift. He was right, although the bustling city of Kampala does remind me of home, it also couldn't be more different. My name's Alice and I am a junior doctor from the UK. I am honoured to have the privilege of volunteering with the MPCU team at Mulago Hospital for 6 months before starting the next stage of my UK training that will take me closer towards become a Palliative Care specialist. As I am almost halfway through my time here, I thought I'd share some of my reflection on this incredible experience.

Something I have been really struck by is how comfortable clinicians and patients are here at discussing spirituality. The majority of the population would describe themselves as Christians, but there are a number of other religions represented here, including 14% of the population being Muslim. I have seen the MPCU model holistic care beautifully, addressing each patient's spiritual needs just as easily as they would address physical or social needs. They appear to be just as comfortable asking questions about a patient's faith as they are asking them about their pain. I can't say that this is something that I have seen modelled anywhere near as well in the UK and I am learning so much from the team. It does help that spirituality is an integral part of the culture and community life, as evidenced by the fact that all teaching sessions and meetings will start with a verse or two from a hymn (depending on how many verses we can remember) and a prayer. It doesn't feel divisive, with a mixture of people from different faiths in our team taking it in turns to lead these times. I personally enjoy the peace and hope that this seems to bring into an environment that can feel very chaotic and sometimes hopeless.

However, I've also seen the darker side of 'religion' here. I have noticed that many patients will present in the late stages of disease. This is often because they have first been to a traditional healer healer, be it a 'herbalist', 'witch doctor' or even 'church pastor', who has dissuaded them from accepting 'western medicine' and instead offered alternative remedies or prayers in exchange for large sums of money. Being a Christian myself, I understand the importance of prayer to patients. However, I have really struggled with the scepticism of many patients to Western medicine and instead often unquestioning trust in other treatment options. The MPCU team handle these cultural difficulties with great patience. They work hard to build relationships and trust with their patients, so that the patients are then able to comfortably engage with the excellent palliative care offered by the team.

I hope I can take what I have learned from the team here and use it in my own clinical practice. Yes, spirituality is much more obvious in Uganda. ('God's plan supermarket' is my local UHT milk/banana provider here. I think you'll agree, a much more interesting name than the 'Tesco local' down my road in the UK) However, the spiritual needs of patients in the UK are just as significant as in Uganda and there's so much we can learn from the way they are approached and managed by the team here.

Now, I am no 'fashionista', but I think there's time for one more more light-hearted reflection on Uganda-style hospital attire. The concept of dignity-stripping, paper thin hospital gowns found in NHS hospitals do not exist in Uganda. This means that patients will bring their own clothes to wear in hospital...and I had not realised what a difference this would make to my perception of them. Although NHS-prescription gowns are practical (washable, quick to remove, oh so flattering) and ensure that no patient looks superior to another (the business man looks exactly the same as the homeless person who has a substance problem). Yet it means often all I see on a busy ward round is another anonymous 'patient' in front of me, rather than an individual. Here, however, due to the hospital being unable to provide gowns, patients will dress in what they would wear at home. This helps you see so much about a patient's background and social circumstances, but you also get a little glimpse of their character and, on occasion, their breakfast. Women will even go as far as to wear a 'gomesi' . I've just been surprised by how differently I subsequently see the patient. They're no longer just another 'patient'. They're the lady who looks beautiful in her blue and gold gomesi!

Thank you so much to the MPCU team and Cairdeas for not only giving me this opportunity, but helping me to feel so welcome and at home in a culture from which I have so much to learn.

We are delighted to have offered regular travel scholarships for partners who are presenting work at the annual Indian palliative care conference and this year we supported Hamilton Inbadas ( Cairdeas Trustee) who was delivering a plenary and Dr Elizabeth Namukwaya who is the clinical head at the Makerere Pallaitive Care Unit alomg with Dr Mhoira Leng. These cross exchange and south to south interacations are so rich and Cairdeas is keen to develop this further. The opportunity for sharing, learning, being inspired and forming collaborations for the future is so important. Dr Liz shares her experience as a first time Indian visitor, being mentored in Indian dress and culture and of the conference where she was presenting work from her excellent PhD and from MPCU. Please find PDFs of the presentations including Dr Liz under our resources section and this includes several posters and 2 sessions on refugees needs in palliative care and our work with Gaza colleagues.

'On the 6th of February 2017  I had my first travel to India and it was the first time to travel by Etihad airlines. I was going for the IAPCON conference in Coimbatore. I travelled with Dr.Mhoira and to her India is another home this was very helpful because gave me some lessons on Indian dressing and food along the way and introduced me to some of the culture there, including the meaning of the head shaking. Even with this information I did not really know what to expect. We arrived at Coimbatore very early in the morning the next day and found the conference organisers had prepared transport for us.  As we travelled to our hotel what stood out for me was the hooting. In Uganda people hoot but in India it is at another level but whereas in Uganda it may be offensive in India it is acceptable and a form of communication letting the other driver know you are coming right behind him or overtaking him and so I got used to this very quickly. Once at the hotel we were served with a delicious breakfast and I had my first taste of many India breakfast foods. I was amazed at the many number of ways rice can be processed and cooked. Although initially the foods were spicy for me there were delicious  and I soon accepted them (though took my antacids regularly).

We were booked in the lovely Residency Hotel and the staff there were just excellent; the best I have seen in all the hotels I have ever gone too. They were extremely polite and always willing to help all the time. The rooms were very well cleaned every day and internet access was great.

Another reason I was so glad to travel with Mhoira was that she knew the best shopping places in India with good quality clothing and good prices and she took me to Fab India and after a few hours there, I was ready to attend the conference dressed in a culturally appropriately way. We used an auto vehicle and it was a fun ride.  Mhoira introduced me to her family in India, lovely and great people whom I was so honoured to meet. I was very impressed by Mhoira’s ability to recall the names of the hundreds of the people at the conference some of whom she had met sometime back.

The conference was attended with many other friends from the UK, South Africa and Australia and it was great to see them all again.  Together with friends we had a tour of Coimbatore and Ooty. We so enjoyed the breath taking scenes up on the mountain in Ooty and appreciated the greatness and wisdom of God through all the variety and beauty of nature, my heart was singing ‘How great Thou art’. We saw a variety of the Indian living conditions ranging from posh areas to poor areas. There was so much similarity between the living conditions there and those of many areas in Uganda. We also saw the great art on their temples and learned a bit about their religions. I was impressed in Ooty by the government’s efforts in nature, having gardens for tourism and study purposes. Another highlight of our tours was the car museum in Coimbatore recommnede by Dr Balaji, the conference organiser and local resident; it was very impressive.

The conference was very well organised, time management was good most of the time and the people were really very friendly.  I really liked it that the conference included people from so many disciplines in medicine and nursing and I learned a lot from specialists from these disciplines and it gave me research ideas. I was amused that most people had not seen a black African person and often asked me where I came from, stared at me and asked to have photos with me, even children.  The day I had most photos with people who did not know me was the day I wore a saree, I caught many people looking at me and showing others that I was in a saree. I often see this happen to white people in Uganda and now I also got to experience this myself.  For me it was not offensive as they were genuinely not used to seeing someone like me and with my braided hair style which was also a common question on how I did it. I enjoyed the different foods served at the conference and at the hotel especially chicken biryani. I also enjoyed the entertainment from the children with disabilities and the music group on the last evening.

At this conference, I  had the opportunity to present in 3 sessions. The first presentation was part of a qualitative research workshop where I presented an example of how qualitative research can be done in palliative care using my PhD experience and the title of the presentation was: ‘The experience of living and Dying with Heart failure in Uganda’. My other 2 presentations were in the free communications sessions and I presented another aspect of my research titled: ‘The multidimensional experiences and needs of Ugandan patients with heart failure’. The third presentation that I did on behalf of my colleague Dr. Jack Turyahikayo who was unable to attend the conference and it was titled: ‘Outcomes of care among patients supported by specialist palliative care services in Mulago hospital’. I thank the conference organisers for the opportunity to share those presentations. I had great feedback from the audience being able to present created opportunities for future collaboration and networking from the audience.

 I was priviledged to listen to the work of some of the leading people in palliative care in India and in the world, whose work I had read and it was good to attach faces to their names. I was very happy to be introduced to them by Dr. Mhoira who is a friend to all of them and to get their contacts and I hope this will open doors for collaborations in the future.

I was very impressed with the posters and the conference program that was very inclusive of many aspects and dimensions of palliative care. The topics were very interesting that it was difficult to choose where to go because many times these sessions were running in parallel.  The presentations were of high quality and evoked rich discussions. It was very inspiring and encouraging to hear from the chief guest and guest of honor, their personal and their relatives’ experiences of living with chronic illnesses and how they coped and experienced growth with these experiences. It was also motivating to hear their positive experiences of receiving palliative care. Working with dying patients and suffering people most of the time sometimes makes you wonder if your personal concept of making a difference in  people’s lives is the same as that for patients and their families, because most times you seldom get feedback, therefore hearing  these testimonies at the conference was very encouraging to me as a practitioner to continue with this work of palliative care.

The presentations on palliative care for vulnerable populations entitled  ‘Hidden lives , hidden patients’ were eye-opening and made me reflect more on how we should extend our care to these groups of people in my country. Another thing that stood out for me was how specialists from multiple disciplines have been involved in palliative care in India, there were presentations made by neurologists, urologists, radiologists, physiotherapists, psychiatrists, occupational therapists, psychologists etc.  This was very impressive and I learned a lot from these specialists even in these few sessions.  I realized this is a great   opportunity for mutual learning for palliative care specialists and other specialists. Although we have multidisciplinary meetings with oncologists in Uganda this is not so common for other disciplines and  and I hope to engage these other specialists  in Mulago hospital   so that we engage in multidisciplinary meetings which may foster joint research and conferences in the future.

I thank Mhoira and Cairdeas for the opportunity and I hope that one day I shall go back to see more of this country.'