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When home-based care is best

30 November, 1999

Sister Carla Simmons writes about bringing home care to families living with AIDS in Uganda. She is a sister-doctor of the Medical Missionaries of Mary. This article first appeared in Healing and Development, a publication of the Medical Missionaries of Mary.

For five years I had worked as Medical Superintendent at Kitovu Hospital, but when I was able to pass over that role to a Ugandan doctor, I could follow my dream – to do something to help people living with AIDS through home-based care.

You get a different picture when you see a person in their home. As the doctor on the team, I call to see any patients referred to me by the nurses. It might be a patient they want advice about or a patient needing palliative care. When I worked in the AIDS hospice in my home city, Detroit, I saw the benefits and the need for palliative care for patients suffering from AIDS.

We offer this service to our own patients in the AIDS mobile outreach programme and also for patients with cancer referred from the hospital. While the purpose of our mobile Outreach Programme is to care for people and families who have been struck with AIDS, you couldn’t have a service in an area as poor as this without it being available to anyone who needs it.


Another aspect of my work is to try to develop a more intensive programme for TB – the disease which kills more AIDS patients than any other single thing. This makes it important to detect it early and start treatment. It is also important because TB, unlike most other infections that AIDS patients get, can be transmitted to healthy people. So detecting and treating early protects the family, especially the children. We have hired a male nurse who can go out and do contact tracing, case finding and case follow-up.

We have twelve nurse-counsellors on our Home Care Team. Each one of them is gifted. They don’t come to work on the mobile Outreach programme if they are only nursing as ‘a job’. This really requires dedication. They work long hours, arrive 8 a.m. to get their things ready, and often don’t get home till 7 p.m. Their day takes them over very bad roads, working with people who are sick and dying all the time. It takes something special to do that kind of work.


Each day, three vehicles each with a driver and a nurse, go out to visit designated centres. There, patients gather every two weeks. They have time to discuss various topics, i.e. hygiene, good food, social problems etc. The nurses spend time with each patient advising them and giving the basic medicines. If patients are too ill to come to the centre, the nurse will often do a home visit.

Volunteer community workers

Some of our volunteer community workers are very active. Often, our patients are

far-flung over a wide distance in remote places. I cannot ever remember a time when we stopped to ask somebody the way and they didn’t drop whatever they were doing and get into the car with us and come to show us the house we wanted.

I remember one day we set out to see a child. We knew the father was working in Kampala, which is 80 km from here. It was pouring rain, pelting out of the heavens. We called to the house of the local community worker. She was a young woman, herself eight months pregnant. She put on her raincoat and boots, and brought us to where the grandmother and the sick child were. When we were finished treating the child, we were going to take the community worker home again, but she said ‘no, no, I’ll stay with the grandmother for a while’.


Parish-based catechetical work

Because many of these volunteer community workers have to get to very rural places, in the past we got some funding for bicycles for them. This year we managed to find the money to provide gum boots and umbrellas for them – it was our small way of marking the international year of the volunteer. But my real dream would be to be able to give each of them a bicycle.


Funding exhausted

A lot of research has been done on AIDS in Uganda. In Rakai and Masaka districts now, the incidence of new cases is going down. But as far as our work goes, the incidence of cases of AIDS is not going down, in fact it is even more common now because many of those already infected with HIV are developing AIDS. The hope is that in ten years from now we will see it going down. But for at least the next ten years we have our work cut out for us.

Unfortunately, other things, including medicines and transport, have exhausted our funding. We have between 2,500 and 3,000 people with HIV. Probably 70% to 80% of these have AIDS or AIDS-related conditions. More and more we are seeing patients coming to us with full-blown AIDS and dying within 6 months of being on the programme. But we still have people who have been on the programme for up to eight years. This makes you wonder do they have the same kind of AIDS, is it the same strain? Or, are they surviving because of the support they get from the programme, the encouragement to live positively and knowing there is someone there they can turn to.This wonderful bunch of volunteer community workers started out with a few catechists. It was parish-based from the very beginning. After a while, the catechetical work reached out to become a community service. It grew from there. People offered to become involved; maybe a family person of their own was ill. Although we don’t remunerate community workers, it gives them a status in the community, and many of them have been elected to local political positions. They are seen to have leadership. The education wing of our mobile Outreach Program does refresher courses for community workers, so all of them get at least one week’s upgrading workshop each year.Lately, my weeks are spent doing programmes for our community workers, introducing them to palliative care, and TB prevention and treatment. We have over 700 community workers in 15 parishes. They are all volunteers. These are ordinary people with jobs in their own place. The great advantage of the community workers is that they know the patients attached to their centre. These volunteers have received some training in counselling techniques, and in hygiene of course. They know the patients, understand their problems, listen, and talk to them. On a clinic day, if a patient is unable to come to the designated Centre, a community worker will tell the nurse at the Clinic, who will either go to the home or give the community worker the medicine to bring. We are very fortunate in Uganda that morphine is available for treatment of severe pain. Because morphine is a classified drug, an opiate, a drug of addiction, there are very strict laws as to its handling, use and prescription. In many African countries it is not even allowed to be imported. It is only since the growth of the hospice movement that the benefits of morphine in terminal illness have been appreciated fully. The beauty of the morphine we use is that it is oral, cheap, easy to take, and wonderful for pain relief, as everybody knows. It is also helpful in the control of severe diarrhoea that often accompanies terminal stages of AIDS. That gives tremendous relief not only to the patient but also to the family.

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