Annual Report 2018

October 7th, 2018

Over the past year we have continued to support the work of our Ugandan partner, the Makerere Palliative Care Unit (MPCU) in Kampala, who have been extending the volunteer programme to develop additional volunteer cohort, specifically based around the Naguru hospital site. We have provided funding to allow a comprehensive training programme and to help with volunteer expenses, and also to support a new initiative aimed at training general nurses about palliative care who can act as a link between the hospital wards and departments and the MPCU. Extending the awareness and capability for palliative care is an important part of building capacity and capability within the healthcare system. There is good news from Kampala in that a new radiotherapy machine is now operational, and a further machine is planned for later this year; a significant help and hope for all patients.

The Palliative Care Association of Uganda held a conference in August 2017 in conjunction with the Uganda Cancer Institute which was celebrating its 50th anniversary, and I was pleased to be able to visit this as it gave the opportunity to make many contacts and get a better overview of the service provision for patients and their carers. In particular I met the Executive Director of the Uganda Cancer Society, discussing the potential for a cancer support centre which is also one of his key aims. This contact has continued over the year and we see a good opportunity to moving forward with developing this initiative.

Liz Nabirye, the information nurse from MPCU, visited the UK in the autumn, and was able to meet members of the BOAT charity who have supported her over several years. As a result we were delighted to receive a further grant towards the MPCU projects. Many thanks to BOAT and all our other donors for your support.

As always many different people and organisations have generously supported us and nothing at all would happen without this. I hope this report will give you an insight into the work that we are trying to do and the use we are making of your generous help, so another big thank you to everyone; please do keep on supporting us.

Christine Whitehouse

Download our full Uganda Cancer Trust UK Annual Report 2018.

Congratulations to Peter Ogik on his recognition from the Obama Foundation

October 7th, 2018

Uganda Cancer Trust UK warmly congratulates Peter Ogik from the Source of the Nile Union of Persons with Albinism (SNUPA), who has been chosen by the Obama Foundation as one of Africa’s emerging leaders for his work with people with albinism. He is one of just 200 people selected out of 10,000 applicants.

Patient stories from the volunteers – Rita

October 7th, 2018

Toko Friday, a lead volunteer at the Makerere Palliative Care Unit, writes about a patient that the volunteers provided support to earlier this year.

Rita (not her real name) was a 49 yr old refugee from Congo diagnosed with breast cancer which had spread to her lungs. She was married with two children, 24 and 15 years. After spending several weeks on the surgical ward in Mulago Hospital she was referred to the palliative care team by the surgical doctors for pain and symptom control. Being a member of the multidisciplinary team (MDT) as volunteers, we visited her and her husband who is her main carer. Though we had challenges with communicating with them because of language issues, we managed to establish a good rapport with the help of another carer who was able to interpret. We became very good friends and she shared a lot of information regarding her fears and concerns about her illness. She was worried about getting treatment and a cure for disease and feared she may end up dying on the ward and never to see her children again.

“I don’t have money, I can’t even afford investigations. I want a cure; I want to go back to Congo and see my house and children”.

Rita with her husband and a volunteer from the Makerere Palliative Care Unit

Rita with her husband and a volunteer from the Makerere Palliative Care Unit

Her main distress was overwhelming pain and inability to walk and difficulty in breathing – she was bed bound and could not even turn in bed. The team prescribed oral morphine for her, which the volunteers helped to get from the pharmacy and also educated her husband on how to give morphine, explaining that this will reduce her pain and improve her breathlessness. She was encouraged to adopt a sitting position and other breathing techniques to make her as comfortable as possible. Practically the volunteers were able to pick her drugs from the pharmacy and also help in translating the English language to the patient and family since they could only communicate in French and Swahili. We were able to liaise with Inter Aid an organization that supports refugees who helped with providing food and upkeep to enable the stay on the ward. After a few weeks later her symptoms were managed, a biopsy was done and referred to the Cancer Institute. Unfortunately, more investigations were needed before treatment could start but she was unable to continue due to financial constraints.

As volunteers, we continued visiting her on the ward, spending time with her and her husband and at times praying with them. They were very grateful to us and the palliative care team, saying “you are angels from God, we are refugees, but God has sent you to visit us and comfort us, please come always”. We continued to liaise with the social work team, but it was difficult to raise funds for her investigations. This was quite distressing for the patient, carer and us as volunteers. She was then discharged back to the Refugee camp and as she was leaving she said she was very grateful to us for the love, care and support given to them as strangers and wished God’s blessings. “At least let me go and see my children before I die” said Rita as she left the ward. Her husband called to inform us of her death two weeks later. May her soul rest in peace.

Update on radiotherapy provision in Uganda

October 7th, 2018

A new radiotherapy machine was commissioned in January 2018 and in March delivery of a second Cobalt 60 machine, to be installed at the Uganda Cancer Institute, was also announced, with a further five machines planned within a few years. This will really dramatically improve the provision of treatment and the chances for a successful outcome for many many patients.

Sadly not everyone can manage to get treatment and Toko Friday, volunteer at Makerere Palliative Care Unit has written very movingly about one such patient that the volunteers provided support to recently.

Mulago palliative care nurse visits the UK for training

October 7th, 2018

Liz Nabirye (palliative care nurse from Mulago Hospital, Kampala) visited the UK in October 2017 for a palliative care course on a bursary from St Christopher’s Hospice.

Whilst here she visited members of the Blackfriars Overseas Aid Trust. Their generous donation to Uganda Cancer Trust UK has enabled us to contribute to Liz’s salary. She also made a visit to the Maggie’s Centre at the Churchill hospital. Here she writes about her trip

My visit to the UK
The award of a bursary to attend an academy week at St Christopher’s was a dream come true for me. My visit to the UK will always remain such a memorable one. The international exposure really expanded and broadened my knowledge of end of life aspects with participants who were from different parts of the world.

I was inspired by the feedback I received on sharing my Ugandan experience, especially when many
said we were doing great work and wanted to hear more on how we were overcoming the challenges. My valuable visits to the Royal Marsden and St George’s hospital enabled me to see palliative care operating in settings with available resources.

Liz Nabirye with Uganda Cancer Trust UK trustees Elizabeth and Michael Minton

Liz Nabirye with Uganda Cancer Trust UK trustees Elizabeth and Michael Minton

I then came to Oxford and had an opportunity to meet members of the Blackfriars Overseas Aid Trust committee at Blackfriars church. They were very welcoming and were interested to hear about my experience of working in a resource limited setting and about my role in everyday work with cancer patients. I was able to explain to them that I was not only involved in providing clinical care, psychosocial and spiritual support but another important aspect of my work was the provision of information to address the concerns of cancer patients and their families. One of the other roles I shared was my involvement in training and mentoring link nurses and volunteers who bridge the gap and ensure continuity of care. I also expressed our need for training more volunteers as some of the existing volunteers have moved into full time employment.

A visit to Maggie’s Centre Oxford

Liz Nabriye visits Maggie's Oxford Centre

Liz Nabriye visits Maggie’s Oxford Centre

I visited Maggie’s Oxford at the Churchill Hospital. It is a beautiful building. This is a charity offering free practical, emotional and social support for people with cancer their families and friends. No referral or appointment is needed to visit the centre.

What was so appealing was that the centre feels like home and yet it is an in-between space. It is not a hospice or a clinic. It is a drop in centre and it is free. It offers information, advice on nutrition, support groups, relaxation classes and a psychologist and cancer support staff. They are there for anyone needing to talk about the most intractable subjects like fear of dying, the anxiety of cancer returning and other issues not easy to address in a hospital environment. I appreciated that people with cancer and their loved ones need time and space as part of the total package of care and this support beyond cancer treatment.

My visit to the Maggie’s centre was a practical exploration of the potential for the development of an information and support centre for our cancer patients and their families.

I appreciate everyone who made it possible for me to have such a wonderful and memorable experience in the UK.