Aicha is a nurse who works part-time in the palliative care project in Mauritania, West Africa. She visits patients in their homes, helps to train others and is a local advocate for palliative care. She also works as a dialysis nurse in the renal unit of the National Hospital. 'I have worked for Cairdeas Sahara, the Cairdeas project in Mauritania, for around one and a half years. I have learned a lot of things in this time and I now think of others as I have never done before. We, as a team, work hard to reduce the pain of patients and their families. It is a privilege to be present in people’s lives at the moments when they have need for palliative care. The relationships I have with my patients are more personal than ever before. I have learned how to relieve suffering of the patient and their family. I accompany the patients until the last moments of life, all the while striving to reduce their pain and comforting them in all ways possible. I have learned much about how to appropriately advise people to reduce them wasting their money on pointless acts concerning their health. We comfort them and teach them how to live with one another. We give a helping hand to the family when there is need. Before our involvement, they were isolated because of several factors - many of these reasons are because the others do not understand the illness and are frightened, or because of the nausea inducing smells. We re-establish the position of the patient in their family and community. This means to explain their condition according to what they want to know and in a way in which they can understand and accept. We try to teach the family how to cope in difficult situations, and sometimes just treating the smell of the wound can change their whole situation in the family.'

Mauritania is located where the Sahara desert meets the Atlantic ocean and it wasd a pirivlege to visist Dr Dave Fearon and the palliative care team earlier this year. It is a resource poor country and is four times the size of the UK, with a population of 3.5 million. As part of the partnership between Cairdeas International Palliative Care Trust and the Mauritanian association ‘ASSIDE’, a recent grant from THET has facilitated palliative care training events. Twenty-five health care workers travelled from the interior of the country to the capital; the furthest distance travelled was 680 miles. Ten of these participants were selected to stay for a second week to be trained as partners. The training was interactive, with a mix of short lectures, small group work, interactive activities, role play, video recording and playback of communication skills, and visiting actual palliative patients in their homes. Here is a quote from one of those traiend '‘Before the training I thought I was good at communicating with my patients, rating myself as perhaps 9 out of 10. After watching the video recording of my role play, I realised that I was really only functioning at around 4 out of 10.’

Great work being done and we will have more information and stories from Mauritania in the future including some fascinating anthropological studies. Check out the facebook page Cairdeas Sahara.

              Over the summer I took the unusual decision with my girlfriend to travel to Uganda and volunteer. This was something Lucy had thought about for years but was new to me. I assumed IT skills weren’t in the skillset of a volunteer in Africa, Lucy’s medical training being more of the stereotypical CV. Nevertheless I was encouraged that IT skills would be of use to the Palliative care charity Cairdeas we were going to work with.

              I spoke with my managers and received support to apply for a leave of absence and to enjoy my time in Uganda. We began saving and paying for inoculations in preparation for the 7 weeks in Africa.

                We arrived in July and our first impressions were getting picked up at the airport and the chaotic drive to Kampala, I had never seen, and probably won’t see, traffic as bad as Kampala’s traffic. Any odd ideas like “giving way” or “queuing” are clearly not on the driving test here. We’d soon get used to it though and were driving Ugandan style to work most mornings.  Cairdeas aims to build a Palliative Care capability in developing countries, this was a great thing to be part of as I felt the team was making a lasting difference rather than a stop gap solution.

                I was mainly organising the relaunch of this website which had been down for a relaunch for over a year. I spent much of my time in the office at the hospital working on the website or helping the nurses with their smartphones or PowerPoint, but on my last day in the office asked one of the volunteer coordinators Ivan if I could join him on a walk around one of the cancer wards. In Uganda most personal care for patients in hospital is actually performed by a friend or family member of the patient, 24/7. Most of the attendants sleep on the floor of the ward or under the patient’s bed. Nurses work across large wards and spend much of their time assessing symptoms and providing medication. The volunteers are people from the community who want to help patients who may not have someone to attend for them or need help getting prescriptions. These volunteers were the most inspiring thing I saw whilst I was there, they did so much good by listening and comforting the patients. It was truly humbling to see their dedication.

                The health system in Uganda is limited by the standards I was used too, there were some free drugs available to patients but only a limited selection and a lot of pressure is put on the patient and family to come up with large sums of money for treatments. These commitments to treatments could often bankrupt families when terminal or long term illnesses were diagnosed. I found this so sad, especially when put into context by the corruption stories we would hear from the locals. The corruption in Uganda has got to such a stage that aid is delivered direct to not for profit organisations rather than to the government.

                Looking back on it all I feel the best investment Lucy and I made and probably will ever make was the time we took to go to Uganda and to work with the talented and dedicated people of MPCU. We spent time working and teaching some brilliant people who will continue doing brilliant work whilst we are back at work in the UK. We saw lots of what Uganda had to offer, including a safari in Murchison Falls National Park and a trip white water rafting down the Nile.  I would encourage anyone to take the opportunity to invest your time in something new, challenging and truly worthwhile.

                As I type this back at my desk after our trip, getting used to the 9 to 5 and loving my bike ride to work again,  I know that I’ve learned and experienced so much that will benefit me, and hopefully left some more IT literate nurses in Kampala! I'd like to thank the amazing MPCU team for being so welcoming. For anyone interested in knowing more about the work Cairdeas does, please look around the site and contact us.

Cheers, John

Greetings to all our supporters and friends and to those who share with us the vision for a world where palliative care is available to all. Thanks to all who have helped create this great new website and if you have not done so yet please become a FB and Twitter follower #CairdeasIPCT. We will also be putting on twice monthly blog posts with many of our team and partners contributing so please read, comment and think about contributing.

As partnerships are at the core of Cairdeas work we want to start with the words of some of the team at the Makerere and Mulago Palliative Care Unit (MPCU) in Kampala, Uganda who are our biggest partner. We shared these statements as part of our annual awareness month #cairdeaspalliative care #cairdeaspurpleparty but this was pre-website! This team has grown and developed as individuals and in professional achievements in the last 8 years and we are now starting a process of developing our next strategic plan. Huge sacrifices, significant commitment, love and friendship for each other, our students and mentees and in particular the patients and families we serve. Many thanks to all.

Florence who has been a nurse with the team for 5 years and a palliative care nurse for more than 15 years. She was one of the first nurse prescribers in Uganda (and therefore in the world!) and is involved in mentoring both nationally and internationally. The photograph with Dr Gursaran Purewal shows her love of colour with an outfit purchased during her visit to India to present at the international conference in Pune, 2016.

“Palliative care is very important. We found that around 80% of medical patients in Mulago need help from palliative care. We are few in palliative care and this is why we must teach and integrate others so that all can care, rather than always waiting for our team first to see the patients. They can do something for the patient first. We want everyone to speak the same language so that we can give the best care to the patients, to as many patients as possible, across the country.

For me being part of the MPCU team is very important and I enjoy it. But it can be hard. We can be short of funds.

I am also happy to mentor others. It takes me time to understand something but when I do I can teach it and when I teach others I feel happy. I want to inspire others. We are few in palliative care so we need to spread the knowledge. We must empower them.”

Our volunteers have so many stories to tell. Here is Toko Friday Santiago sharing from his heart. (photo with Ivan and our Cairdeas Trustee Jacqui MacIntosh)

"It’s been such a wonderful opportunity for me to volunteer with the palliative care unit for the past five years. I have gained numerous skills and experiences that I have not only used for the benefit of the patients here but also for my family members and friends. This gives me the desire to be part of the lives of the patients. The team has been so supportive and I have learnt communication skills, leadership skills and above all teamwork, which I have learnt is key in all aspects. Palliative care is so important, it improves the quality of life of the patients in offering physical, psychosocial and spiritual support which makes them feel valued and cared for."

Esther received one week’s training back in 2012 and worked as a link nurse on the surgical ward. This involves giving basic palliative care to the ward patients and referring the more complex ones to the palliative care team. She joined the team full time since April and has become an integral member of the team.

“Before I had the training patients who were dying could be neglected as the staff thought they could do nothing for them. But since the teaching I realised there is much I cando for these patients. I can allow them to die in peace and though they were suffering they had a smile on their face because of the care they received.

Since working with the team I have learned much more. Before on the ward most of the times I would have worked alone but now I work as a team who have much knowledge that I can learn. I learn how to council them, how to care for all patients with life-limiting illness.

It has changed me. It has changed my attitude.”

We have been so glad to offer scholarships to key team members and huge congratulations to Dr Liz Namukwaya (PhD) Dr Jack Turyahikaiyo (MMed) and lastly, Ivan Onapito, our pastoral and social coordinator. (see photo of the team party!) He has now graduated with his masters in Practical Theology from the Africa International University, Nairobi.

"The past three years have been a priceless experience for me. The lessons learnt have opened my eyes and mind to compassionate care and how important it is to patients and families faced with life-limiting illnesses.

I want to thank you all the Cairdeas supporters who have carried me throughout this journey. Thank you for all you do to build capacity and improve the quality of life for those who are suffering."