LIVING WELL GOES GLOBAL
A self-management programme set up to improve the lives
of HIV positive Londoners is now making waves in Africa
Words James Miller
While
in Kenya in 2003, I visited a weaving co-operative run by HIV positive women
in the slums of Kibera. These women were the envy of local men because they
were now better off than their neighbours.
They had created something from nothing and were supporting themselves entirely
through weaving rugs and children’s clothes. They did everything from
scratch, even going out to the fields to tease out bits of wool caught in
the fences for spinning. The women had created a supportive environment for
themselves, financially and emotionally. When one of the women died, the rest
agreed to take on her children.
Africa’s HIV positive people face terrible stigma; often seen as a lesser
human being and living in fear of being ostracised by family and friends.
This makes you more likely to be unemployed and there’s no safety net.
Yet these women managed to band together, learn a skill and get the equipment.
It was witnessing this project that finally made me realise how much untapped
potential there was in many communities affected by HIV. It also made be realise
how a Living Well programme might be able to help.
If you don’t already know, Living Well is a London-based programme for
people with HIV. Launched nine years ago, it has rapidly expanded, offering
an ever-improving service in primary care trusts across the capital.
The seeds of the idea of taking Living Well to Africa were first planted in
summer 2002 at Barcelona’s International Aids Conference. The Society
of Women against Aids in Kenya told us their moving stories of struggling
with no money or support.
Back
in London, a group of us from different organisations began to talk about
how a Living Well programme in Africa could work. Almost four years on, after
a successful bid for funding from the Elton John Foundation, it is finally
a reality. After a few hiccups, we managed to set up four facilitator-training
groups; two in Nairobi, one in Mombassa and, after news of the programme spread,
one in Uganda.
Living Well is a seven-week positive self-management programme run by trained
facilitators living with HIV. In a supportive setting, participants learn
how to manage their condition, both practically and emotionally; from how
to handle meds to dealing with symptoms to setting future goals. Importantly,
participants meet others facing similar concerns and challenges, helping them
to build a supportive social network. We saw no reason why it couldn’t
work as well in Africa.
The challenges were huge. Kenya is losing an entire generation of parents
to Aids leaving thousands of orphans. On route to the Mama Ngina orphanage
in South C, Nairobi, we stopped at a shop to buy lots of toys for the kids.
We arrived with a big bag of games and dolls. When the orphanage leader came
out, we told her we’d brought all these goods. “That’s very
nice of you,” she said, “but next time, we do have a list of things
we need, like dried milk and cans of food.” It was an eye-opener. Of
course, these children needed to be fed and clothed, not just be given games.
They have nothing. Some have witnessed parents dying or have suffered abuse.
Baby Christophe, for example, was found after he’d been thrown down
a toilet. He was just a year old. Yet the children are so well behaved and
look after each other; the older kids care for the babies.
Medication is gradually becoming accessible, so there’s a growing need
for information and health literacy. People also need to develop coping skills.
These drugs give people a chance, but they still have to deal with stigma
and enormous practical hurdles.
At
first I was overwhelmed by the enormity of the problems; the poverty, lack
of education and medical care.
I felt angry; I wanted to stamp my foot and say: “Something has got
to change around here.” But of course, no individual or group is that
powerful; it’s only by working with people and looking at the positive
side that you can slowly make a difference.
We also had to take account of cultural differences. For the African participants,
the programme was a different way of thinking; the idea of taking responsibility
for yourself was especially difficult for the women. Fitness was a funny one.
In the UK, it’s about going to the gym two to three times a week and
doing 20 minutes of cardiovascular. But these people have never even seen
a gym. “When we walk three miles to get water, does that count as exercise?”
they asked. It’s clear their daily lives already incorporate a lot of
physical exertion.
Of course in the UK we have the NHS and everyone knows about the system, but
in Africa, because of the lack of access and money to see a doctor, most people
will see a local healer or use traditional herbs.
The challenge was integrating the two cultures. We were not there to say:
“Don’t see a herbalist, it’s rubbish.” It was important
not to make a judgment or tell people what to do. We just had to make participants
aware of the options and encourage the group to share tips and experiences.
I was bowled over by their insightfulness and ability to pick up concepts
and run with them. I’ve never seen problem solving done so well; they
loved the idea of brainstorming. And despite the grinding hardship, there
is incredible optimism and faith. People love to laugh and dance. One of my
most vivid memories was of the facilitator’s birthday party. I’d
never danced so much in my life, even though we had no music. It was just
people clapping and singing. There was an amazing rhythm going and everyone
was participating, and with little alcohol.
I started the African Living Well programme with feelings of hopelessness,
but I was inspired by people’s resourcefulness and humour. At the end
of the programme, I had learned as much as they had.
Word has travelled in Africa and there is a lot of interest in Living Well.
We have plans to create a Living Well International charity. My vision is
to launch a southern and eastern African roll-out and forge a network to connect
people in different countries, allowing cross-fertilisation of information,
and even more hope for the future.
• James Miller is director of the Living Well Programme in London
• www.livingwelluk.com
back to
contents - Issue 121
back to top of page
