There is nothing we con do for you! Why did you come now!'

MAY 2001-------------TH£ SOUTHfRN AFRICAN JOURNAL OF HIV M£OICIN£

HOME-BASED CARE

This is the situation I, as a rural doctor in Mpumalanga, find

myself facing on a daily basis. The challenge that faces me,
like many other rural doctors, is how to improve the plight

of the thousands of PWAs in our rural areas of South
Africa.

Talking to Department of Health [DOH) professionals and

managers, the problem is a lack of finances to provide basic

medication, transport and staff at the clinics. Talking to the

patients and their families, their biggest need is food and

painkillers. Digging a little deeper, there is a need to be

treated with respect and dignity, and to be accepted by the
health system.

funeral costs have added to the huge debt of the family
and/or orphans.

In my search to see how other African countries have

coped with the AIDS epidemic, I visited Uganda, where I

stayed at the Mildmay AIDS Hospice in Kampula. I also
visited Hospice Uganda, and several community home-

based care projects. I observed the patients, rich and poor,

streaming into Mildmay Hospice. I was surprised that there

were no inpatient beds either there or at Hospice Uganda.

The patients were greeted with a big smile and, 'You are

welcome. We are so glad you came today. I can see you
are suffering. How can we help you?'

I asked if I could sit in at the paediatric HIV clinic, and the

doctor stood up and shook my hand and welcomed me to

his clinic. He introduced his patient, aged 8 years, and

asked permission for the doctor from South Africa to be

present during the consultation. The little patient replied,

'You are very welcome:

I could hardly hold back my tears as I saw again the very

There ore no medicines to give you! Go home! come bock tomorrow.
There is no doctor todoy! Why don't you look ofter your child!'

Many go to the 'special doctor', the general practitioner,

who is also overwhelmed by patients to whom a cure can
no longer be offered. Because patients want to get their

money's worth, GPs are often pressured into prescribing

inappropriate medication or resorting to alternative
medicine, reassuring patients that they will get better with

this 'special' treatment.

Dr Margie Hardman, MB ChB, DCH, MCFP

Director, AiDS Care Training and Support (AGS) Initiative, White River, Mpumalanga

PLIGHT OF AIDS PATIENTS IN RURAL
SOUTH AFRICA - A CHALLENGE TO

HEALTH PROFESSIONALS

Finally, having spent all their money, and in debt to

neighbours and friends, the family attempts to care for the

dying relative at home. News may get around that there is
AIDS in the house, neighbours and friends cease to visit, the

children are ostracised at school and drop out, and there is

no income, apart from possibly the granny's pension, and

little or no food in the house. In desperation they attempt

to go to the clinic to ask for a disability grant, often sitting

in queues for many hours, and are usually told they don't

qualify. If they are successful, many months will pass

before the grant is processed, by which stage the extra

All of the above are a sad reflection of many of our rural

health facilities. Nurses who are already demotivated,
inadequately trained for the huge responsibilities they have

to carry, and frustrated by the lack of resources, now have
to carry the extra burden of seeing people dying daily of

AIDS in their communities, often friends and family
members. Frequently, out of a sense of inadequacy and

hopelessness, they respond in anger and frustration. The

patients in turn, lose hope in the formal government health
system, and turn instead to any other source where they

can grasp for hope for a cure.

Many others turn back to their traditional healers, where

they attempt to get some spiritual explanation for their

sickness, perform some rituals, and receive some traditional

medicine, which they are assured will cure them.



THE SOUTHERN AFRICAN JOURNAL OF HIV MEOICINE ------------- MAY 200 I

basics of medical care - treating patients with

unconditional love, warmth, and respect. Treating them as

precious human beings in the sight of God and their fellow

human beings.

Most of the terminally ill patients in Uganda are cared for

in their homes, by community home-based care volunteers.

These volunteers receive excellent training at places like

Mildmay and Hospice Uganda as well as other centres.

A multidisciplinary team from Mildmay goes out into the

communities every Wednesday to run workshops for the

family members caring for terminally ill patients at home.

At the workshop I attended, which was held at a church

hall, the physiotherapist demonstrated how to lift and turn

patients. The nutritionist spoke on how to prepare

nutritious meals for the patients. The nurse spoke on how

to manage persistent diarrhoea at home, and the

counsellor spoke on how to manage a difficult patient.

There was a lot of participation from the group. Finally, the

pastor encouraged and prayed for the family members, and

then cooldrinks and cakes were provided.

Mildmay provides an HIV outpatient clinic, which operates

on a Monday, Tuesday, Thursday and Friday. Patients are

assessed firstly by a professional nurse, and then by a

doctor. They are then referred as necessary, to the

appropriate member or members of the multidisciplinary

team. The team consists of an occupational therapist, a

counsellor, a nutritionist, and a pastor or spiritual

counsellor. Basic laboratory tests were done while the

patient was visiting various members of the team. Finally,

patients would collect their medication from the

pharmacist, and pay according to their means.

A good supply of medication was available, including

morphine suspension, oral antifungals and antivirals, as

well as prophylactic treatment. Those who could afford it,

and had had extensive counselling, were offered

antiretrovirals. They also had more extensive laboratory

tests including CD4 counts and viral loads. There was an

excellent follow-up and monitoring system.

I came home with hope in my heart again, and a vision of

what we could do in South Africa. From small beginnings

we have a home-based care programme operating in the

Northern Nzikazi area of Mpumalanga. Sixty wonderful

community volunteers visit the chronically and terminally

ill patients in their homes, and provide holistic care,

including basic counselling, nursing care, directly observed

therapy, practical help and social and spiritual care. In the
year 2000, '7000 visits were recorded and at present 500

patients and 600 orphans are being cared for in their

homes. Modelled on Mildmay, we are building a clinic and

training centre to provide support to the home-based care

projects. We also endeavour to provide palliative care

training to the nurses and doctors at the government

clinics and district hospital.

I believe that this is a model that can be replicated in other

rural areas. I also believe that there are many health

professionals who are willing and wanting to provide

compassionate quality care for AIDS patients, whether rich

or poor. I believe this is what we as South Africans need to

strive for, and not settle for anything less.