This remarkable story reveals the pioneering work of Dr. Anne Merriman and Hospice Africa Uganda in developing a unique model for the provision of pain medication to cancer patients who do not have access to even the most basic medical care.

A trailer for the film can be found here: http://vimeo.com/32074357

The screening will take place at The Science Gallery, Pearse Street, Dublin 2, with refreshments served beforehand from 6.30pm.

All our welcome to this free event. If you are interested in attending, please contact the office on (01) 4068708, or at info@hospiceafrica.ie

When my friend, Una Murtagh, and I decided to take time off work to volunteer our medical services in Uganda, people were surprised to say the least. The common misconception is that Uganda is a country known for mountain gorillas, civil unrest and little else. Our six months there proved otherwise.

Uganda is located in Sub-Saharan Africa and is crossed by the equator. It has a population of 32 million people and covers an area similar to that of theU.K.The capital city,Kampala, has an estimated population of 1.4 millon people. It is currently undergoing a huge population growth and some reports suggest that half of the current population is under the age of 5 years. Unfortunately, 51% of the population of Uganda currently live below the International Poverty Line of $1.25 per day.

Uganda is a predominantly Christian country, with 84% of the population practising some form of Christianity. Catholicism accounts for 42% of this. A further 12% are Muslims. This huge Catholic proportion can account for the strong Irish missionary influence, or perhaps is as a result of Irish missionaries coming here for many years. English is the official language in Uganda, which made our decision to travel there quite a bit easier. In relation to its climate,Uganda is situated at quite high altitude giving it an idyllic climate, with average yearly temperatures of 17-25 degrees Celsius.

We divided our time in Uganda between two projects. Our first 3 months were spent in Kitovu Hospital in Masaka. Masaka is located about 3 hours South-West of Kampala in the direction of Rwanda. The population is approximately 830,000, the majority of whom are rural dwellers. Masaka was badly affected during Idi Amin’s reign (1971-1979) and the subsequent Tanzanian-Ugandan war in 1979. As a result, derelict bombed-out buildings are still visible in Masaka today. Kitovu hospital was set up by the Drogheda-based Medical Missionaries of Mary (MMM) in the 1970s to serve the people of Masaka. Much of the existing infrastructure and equipment has been made possible by Irish donations and Irish projects down through the years. The hospital currently has about 300 beds. I spent my time on the medical ward while my Una worked on the children’s ward. Although each ward has roughly 50 beds, during busy periods each ward can accommodate 80-100 patients. It is custom in Uganda that when a person is admitted to hospital, their family attends to their basic needs while in hospital. This usually means preparing their food, feeding and bathing them and even administering their medications. As a result, for every person admitted to hospital, they have at least one attendant with them, usually a female family member. Often there are several family members responsible for a patient. The attendants care for the patient 24 hours a day and even sleep in the hospital. It was not unusual to have a family member roll out from under the hospital bed while we were carrying out ward rounds! As imagined, the wards are often overcrowded, noisy places with a combination of patients, family members and staff. When a person is admitted to hospital, a huge burden placed on their family. For example, if a man is admitted to hospital, his wife is responsible for his care while he is in hospital. As the woman has been taken from her duties at home, another family member, usually the eldest child, has to take care of the home. As a result, children, especially young girls, often miss out on going to school when a family member becomes sick.

During our time in Kitovu, we looked after patients with a variety of tropical diseases not usually seen in the western world. HIV is a major healthcare issue in Uganda and with it comes opportunistic infections like Tuberculosis and different forms of malignancies. The reported incidence of HIV in Uganda is 6%, which has dramatically decreased from 15% in the early 1990s. In fact, Uganda is looked upon as a success story in Africa in relation to combating HIV infection. This is due partly to a large government campaign which supports the idea of prevention rather than cure. The government also supplies anti-HIV medications free of charge. Similarly, anti-TB and anti-malaria medications are also provided free of charge. Unfortunately, these are largely the only medications provided by the government. Patients are responsible for buying all of their own medications, even when they are admitted to hospital. In the majority of cases, this means that even if patients are prescribed essential, life-saving treatment, financial constraints determine what treatment they actually receive. In our time in Kitovu, we were often forced to buy medications for patients ourselves in cases where simple treatment could be the difference between life and death.

One huge cultural difference between Uganda and the western world is the value of life. In Uganda, life is cheap. The average life expectancy for females is 50.2 and that for males is 49.1. Consequently, “middle-aged” describes someone in their mid to late 20s, which we discovered to our horror! The reported infant mortality is 79 per 1000 live births. Parents expect to lose at least one child from simple preventable childhood illnesses. As a result, they often overcompensate by having many children in the hope that a few will survive to adulthood. Unfortunately, this perpetuates the poverty cycle as parents are often unable to care for all of their dependants. In some cases, children are sent away to be cared for by an aunt or grandparent. In the latter case, however, it is the child who usually will end up caring for their grandparent. In these cases, the child is unable to attend school while caring for their relative.

In terms of education, it is free in government-run schools. However, children need to have a school uniform and basic equipment like pencils before they can enroll in school. Unfortunately, many families can not afford even pencils for their children so children often miss out on schooling. Often, families can only afford to send one child to school at a time. Obviously, if illness or other financial burdens occur during this time, education is not deemed a priority. It is not unusual for people to have completed only a few years of primary school education and be unable to carry on any further.

For our second 3 months in Uganda, we were involved with Hospice Africa Uganda. This is a non-profit organisation which provides palliative care for people within a 20km radius of Kampala, the capital city of Uganda. This service was set up by Dr. Anne Merriman in 1993. At that time the only palliative care services available in Sub-Saharan Africa were in Zimbabwe,South Africa and Kenya. In 1993, there was no morphine available in Uganda or the majority of Sub-Saharan Africa for that matter. In fact, Uganda became the pioneer for palliative care inAfricaand still holds that position today. Hospice Africa Uganda (HAU) offers palliative care services free of charge to patients living with terminal conditions like cancer and HIV/AIDS. Those people that can afford to are asked to make a donation for their care. There is no facility for inpatient care in HAU so the care is predominantly home based. Everyday, teams of nurses and doctors visit patients in their homes. Often it can take quite a while to reach the houses, requiring 4 wheel drive, off-road vehicles. After assessing the patient in their home, they are given pain relief, often in the form of liquid oral morphine, and other medications for symptom control like laxatives and anti-nausea medications. The medications used are often basic and most of them are available over the counter inIrelandbut they provide effective symptom control. There is also a day care centre facility in HAU meaning that if patients are well enough, they can be assessed in the day centre. There they can get involved in activities like knitting, sewing or simply socialising with other patients. HAU provides food packs consisting of rice, sugar, butter and other basic food stuffs to patients who need them. HAU also has a comfort fund which allows them to give money (between E1.50 and E6.50) to patients. Obviously, this can make a huge difference to most families.

It was a wonderful experience visiting patients in their homes as it provides great insight into the way of life in Uganda. The standard of housing varies dramatically as there are huge differences between rich and poor. There is no middle class in Uganda, simply rich and poor. The fortunate ones live in houses similar to what we have in Ireland, without the central heating of course. The less fortunate can live in one-roomed mud-walled huts with aluminium roofing. Often they do not have electricity or water in their houses. Furniture consists simply of mattresses and straw mats strewn on the floor, where guests are expected to sit. The cooking is usually done indoors, with a charcoal burner providing the heat source. As imagined, these little huts are very hot uncomfortable places and not an ideal environment for examining patients. However, with HAU, all patients are treated in the same way regardless of their socio-economic status or living conditions.

Like Kitovu hospital, much of the funding for HAU comes from donations from Ireland, UK and the US. In fact, Hospice Africa Ireland has an office in Our Lady’s Hospice in Harold’s Cross, Dublin designed for the support and fundraising of HAU.

One of the highlights of my time spent in Uganda was the hospice Christmas party. It was truly a humbling experience. Every patient enrolled on the hospice program was invited to attend the party, along with their families. Patients were collected from their homes as otherwise many would not have the means to attend. After a traditional Ugandan dinner, each patient was given a Christmas gift. For adults, this gift was a plastic basin, bed linen and bags of rice, sugar and salt. Children received a schoolbag with notebooks, pencils, some books and a skipping rope. Seeing the delight on the faces of the patients after receiving such simple gifts was an image I will never forget. For many of them it was the first time they have ever received a gift. It really put the true meaning back into Christmas for many of us.

Despite the widespread poverty,Ugandatruly is a beautiful country. It is located at high altitude, on the shores of Lake Victoria and the Nile river, giving it a lush fertile land in which a variety of fruit and vegetables readily grow. Everything from potatoes (known locally as “Irish”) and corn to pineapples, avocados and mangoes are grown with great ease. Therefore, the people who have even a small plot of land can easily be self-sufficient.

Overall, my time spent in Uganda was an incredibly rewarding, once in a lifetime, experience. It was wonderful to be in a position to give healthcare to some of the world’s poorest, most deserving people. At the same time, it has really made me appreciate how fortunate we are in Ireland. The HSE, even with all its flaws and criticisms, looks like the perfect healthcare system when compared to the Ugandan equivalent.

Elaine Walsh

The majority had severe pain and suffering related to their illnesses, which HAU teams helped to alleviate, improving quality of life, and making their illnesses easier to bear.

Approximately 40% were unable to work due to physical weakness and lacked basic needs such as food and adequate clothing. HAU helped them and their families by providing these.

Sadly, 434 of the patients in the past year were children. A children’s programme has been built up in HAU over the past 5 years to ensure that those with incurable cancers can experience the comfort and support they need. In addition, those with curable malignancies such as Burkitt’s lumphoma who cannot afford chemotherapy have been supported by HAU for treatment.

The clinical building, built to an excellent standard, provides a dignified space for the thousands of patients who now come to hospice for help. It also has lovely child-friendly spaces suitable to provide care and fun to very sick children. It has completely transformed the environment for them and the teams who look after them.

Last month 40 intrepid cyclists took part in the Hospice Africa Ireland Cycle Challenge 2011 and raised an incredible amount of money in the process. Blessed with one of the nicest days of the year, they took to the road on either the 60km or 100km routes, enjoying the beautiful scenery but certainly challenging themselves at the same time!

Fundraising money is still coming in, but even at this stage it has been a fantastic success thanks to the efforts of those taking part. This money will go towards support Hospice Africa and the life-changing work they do with sufferers of HIV/AIDS and cancer in Uganda and beyond.

Some photos from the day can be found at our Facebook page, and if anyone else has any others please feel free to add them!

Huge thanks once again to everyone who took part, and also to the team at Cycling Safaris for all their work in making this year’s cycle such a successful and enjoyable event.

I have been out on a few longer distance routes, heading in various directions around the city.  Last weekend, I headed south to Dalkey/Killiney.  I had no specific end point in mind, rather a timeframe of 2.5 hours and a goal to find some hills.  And find them I did.  I had a pleasant time exploring parts of the southside that I don’t know very well and admiring some of the houses in the area.  I ended up doing a few loops around a small area as I basically pointed the bike upwards whenever I came to a crossroad.  I also explored all the gears on my bike, figuring out the best time to switch between them and at what point the bike would creak rather than switch because I’d left it too late.  I discovered too that I am not a natural descender as I prefer to keep the bike in check with the brakes slightly on, rather than descending as fast as gravity would like to take me.  Given the traffic and the twists in the road, I felt this was the safer choice.

When I got home I discovered that I had cycled about 40km.  Although this was longer than I had cycled before, it was shorter than I had hoped.  On the other hand, according to my mapping website, I had climbed 177m with two climbs at a grade of >2.5%.

This weekend I built up a few more kilometres. By cycling to Phoenix Park and circling it a number of times, I clocked up another 40km doing what was a very pleasant cycle. It hardly felt like training!  My legs were definitely feeling the ache by the next day however when I headed for another spin after playing soccer!  This time I headed northside with my brother.  We rode out along the coast in glorious sunshine with a warm breezy blowing across us.  The effort of cycling around Howth Head was rewarded by the stunning views at the top.

As I descended slowly, a more practiced cyclist flew past, chest low over his handlebars. I could only laugh in admiration.  We were greeted by marching bands in Howth itself, but finally we got through the traffic and made good time on the way home. Another 35km, and another 143m climbed.

I had intended doing at least one training cycle that was >60km, to ensure I wasn’t being foolish in attempting 100km.  However, my weekly totals have been fairly respectable, even if they have been broken up into shorter spins.

So this week, I will take it easy.  My bike has gone in to the shop for a few niggles to be sorted out. I have yoga and zumba to keep me loose and on form. And I have another few days to boost the sponsorship total before heading up to Carlingford.

Anne Merriman made her annual trip for the event, bringing her customary energy, overladen-suitcases (filled with HAU-related material), and much news of the year’s progress in Hospice Africa Uganda.

Warm welcomes on behalf of HAI were extended to Ms Zena Bernacca, newly-appointed Chief Executive Director of HAU. Born in Uganda and living in the UK and Uganda, she brings huge personal experience of strengthening organisations through fostering leadership, learning and development of its members, as well as a love of Uganda.

She is the leader of a new energetic team comprising capable HAU members, known to many, who have progressed within the organisation, such as Dr Eddie Mwebesa, the new Clinical Director, and new members who will be introduced over the coming months.

We would love to see all our friends and supporters there, if you can make it. For further info please contact the office.

Clare has been involved with Hospice Africa for some time now, and continues to be a huge support. Check out the rest of her blog for interesting stories and thoughts, and gorgeous photography!