A head full of nakes
As ministers blast health managers for failing black people with mental health
problems, Amanda Elliot looks at two ground-breaking projects
for people with HIV
Health
minister Rosie Winterton last month launched a blistering attack on NHS chiefs
for failing to meet the mental health needs of the black and minority ethnic
people.
“To be blunt,” she told them in a letter, “Services are
discriminating in a way that is arguably both unethical and unlawful.
“Communities feel alienated from NHS services and many are deeply mistrustful
of them. This fuels and vicious circle of fear that deters people seeking
help.”
She said black people were more likely to experience ‘coercive pathways
of care’ than others with mental health problems.
If black people with mental health problems are failed so badly by the system
you don’t have to be Sigmund Freud to work out that those also living
with HIV must have a particularly bad time.
Double stigma
Depression and anxiety are more common in people with HIV than the general
population and, like HIV itself, mental illness is a highly stigmatised condition.
Untreated depression can affect people’s ability to stick to their anti-HIV
meds. It can also lead people to neglect their health through insomnia and
loss of appetite.
There has been little research into the mental health needs of Africans living
with HIV in the UK. Dr Jane Anderson, of Homerton Hospital, is one of the
few who has bothered to investigate these needs. Her study, presented at the
World Aids Conference in Toronto this summer, found most Africans with HIV
mainly used religion, prayer and support groups to cope.
These patients had a host of problems of which HIV was but one. Now UKC is
hoping to add to this knowledge with new research into African men and women’s
experience of mental health services.
Collecting stories
Dramatherapist Haydn Forde leads the UKC’s community engagement research
project looking at the mental health needs of black Africans living with HIV
in the UK.
“This is qualitative research so we are collecting people’s stories.
The findings will be used to make recommendations to the Department of Health
and service providers on how to improve services.”
This research is unique because the researchers are not a team of Ivory Tower
academics, but eight people living with HIV recruited from African communities,
some of whom have had their own experience of mental health services.
These researchers have drawn up the questionnaire, will conduct the interviews
and evaluate the data. This is the community engagement bit of the research:
getting patients and potential patients involved in trying to work out what
people really need from their services.
Haydn said: “We intend to carry out 30-40 interviews that capture peoples’
stories. A steering committee of HIV consultants and psychologist will oversee
the research to ensure its validity.”
Different takes on depression
Did Haydn expect the study to highlight big differences in the way Africans
viewed, experienced and described mental health problems? Did Africans accept
that what they are feeling was depression or mental distress?
“In my experience most Africans with HIV I have worked with in dramatherapy
do understand the western concept of depression but it is the way they describe
it that differs.
“It is not uncommon for Africans to use stories and vivid narrative
to describe their distress. People have described their aniexty as having
a ‘head full of snakes’. Sometime people describe depressions
as sleeplessness and restlessness.”
Haydn has found that this view of mental distress makes drama therapy an effective
intervention for some HIV positive Africans who like to enact their feelings
rather than sit and talk them out.
Anxious
and alone
Joe, a Ugandan man diagnosed with HIV in 2003, is one of some 40 Africans
in the UK to benefit from a free counselling course offered at the Uganda
Aids Action Fund (UAAF).
Jo said he had never really come to terms with his diagnosis and was full
of anxiety with no-one to talk to.
“I didn’t know what was going to happen next. I tried a bit of
counselling after my diagnosis but as an African man it was hard to open up.
But this was different. We talked about a lot of stuff; my childhood; my sexual
partners; my parents. It gave me a new way of looking at myself: at the new
me. It has helped me to a degree although I feel there is much more to address.
“African men are not encouraged to open up. It is seen as a sign of
weakness. But I think that opening up makes you stronger rather than running
away and hiding from problems.”
Problems similar but different
Jo saw psychotherapist Gus Cairns who works with clients from a range of African
countries. Gus is trained in person-centred counselling and body psychotherapy,
and he uses various psychoanalytic techniques to help clients open up. He
has worked extensively with PACE, the gay counselling charity, and living
with HIV himself.
Gus told PN: “Cultural differences are not a big barrier to Africans
benefiting from psychotherapy. Sometimes you have to explain the rationale
behind counselling first but people are people the world over. My African
clients have problems similar to those faced by all people living with HIV:
sex; shame; disclosure; stigma; isolation.
“Two-thirds of my clients are women. Survivor guilt is a huge issue;
especially for those who have had children die of Aids-related illness. One
of my client’s entire family was been wiped out by Aids and they clearly
have post-traumatic stress.
“Many people feel guilty about having to stay in the UK to get treatment
while leaving the families they love back in Africa. Then there is the sheer
poverty faced by those seeking asylum.
“They are also terrified about relatives and even other positive Africans
finding out about their HIV status,” says Gus.
Sex
“Some male clients struggle with sexual disclosure,” Gus continued.
“Just like many of my gay clients, they end up having a string of meaningless
sexual relationships rather having the one relationship they really want.
Many women tend to avoid sex and relationships altogether. I have also seen
clients in supportive relationships - often husbands referred by their wives!”
Simon Mwendapole, UAAF’s services development manager, who has referred
clients to Gus in the past year, says there is a real need for the service.
“Within African communities mental health is rarely talked about and
is as stigmatised as HIV itself.
“The words ‘mental health’ raise a lot of eyebrows. Positive
Africans hide their antidepressants just like they hide their HIV drugs. If
people see you with them they automatically assume you are mad.
“Our clients tell us the sessions are valuable; that it helps them look
back to enable them to look forward.
“Some clients are sceptical and suspicious when I first mention counselling,”
says Mukuka, UAAF’s outreach worker. “But I urge them to try it
to see if it helps. Most find it does.
“Clients I meet in the clinic have all the usual problems associated
with HIV. But some say they feel suicidal, hopeless or depressed or they not
eating and sleeping. These are the people I refer,” she added.
UKC The Community Engagement Research Project would like to hear
from Africans willing to contribute their stories about how HIV has impacted
on their mental well-being. Call Haydn on 020 7564 2180
• hforde@ukcoalition.org
Gus Cairns Psychotherapist with special interest in HIV.
gus@guscairns.com
CASCAID Provides a psychological, counselling and mental health services
for adults and children affected by HIV in some London hospitals. 020 7740
5122
Uganda Aids Action Fund 020 7394 8866 • www.uaaf.org.uk
