Whatever their circumstances it was clear that this
group of women also relied heavily on health workers for
both physical and psychological support. Since the study
sample consisted only of women in receipt of hospital
care in London, it cannot tell us about those women not
using such services.5 Nor can it tell us about women
receiving care in hospitals in other parts of the country.
This is an important point, since there is some evidence
that HIV-positive patients are likely to receive more
sensitive and more effective care in specialist units of the
kind the women attended (Green & Sobo, p. 122).6 But
for this group at least, the health care they received was
seen as a major resource in their survival strategy.
Of course this is not surprising since the services were
often quite literally life saving. But in most cases, the
women valued it for reasons that went beyond access to
medication. Asylum seekers and all those with the right
of abode in the UK are currently entitled to use the NHS
without payment and many of the women contrasted
this with the lack of care in their own country. There
have been some reports of difficulties among refugees
seeking primary care (Jones & Gill, 1998). However,
none of the women in this sample reported such
problems. Some did find the clinic depressing, saying
that they were reminded of their diagnosis by frequent
visits. Several reported that doctors tried to explain
aspects of care which they did not want to hear and
some were afraid of being recognised. However, most
rated the HIV services they received very highly.
W 49 from Zambia said, ‘Here they treat you good, in
our country they can’t even touch you, they do like this,
no go there, they shout at you and make you feel bad,
but here they don’t do that they talk to you nice.’ W23
from Uganda was also very positive about her experiences, ‘They give you all the support when something is
going wrong, they tell you something is wrong they
don’t like just write your notes and chuck you the medicine. No they will explain to you.’Many women
said how much they valued the continuity of care they
received and many travelled long distances to stay with
familiar clinical teams.
Two-thirds of the women interviewed had experience
of antiretroviral therapy (ARV). Most were fearful of
side effects prior to initiating the drugs and many
reported adverse events on starting therapy. But in most
cases, these either spontaneously resolved or treatments
had been changed to provide a manageable regimen. For
W23 from Uganda, the initial effects were very bad but
she was determined to go on, ‘It was horribleyI got side
effects, diarrhoea and vomitingyso I had to be really
strong , you know, really, really persevereyI was just so
determined I wasn’t going to changeyI knew my body
would adjust. I just had this strong feeling that it would
adjust and it did.’
Most women on antiretroviral treatment were
strongly committed. Many had given up a great deal
to maintain their access to the drugs and they tried very
hard to make sure the regimen worked. The positive
influences of peer support in initiating and maintaining
therapy were highlighted by a number of women.
However, those living in shared accommodation de-
scribed the difficulties of concealing medicines and the
need to avoid taking them in public. For women with
limited access to food or cooking facilities, drugs
requiring dietary manipulation were especially difficult
to manage. ‘I had to go on medication immediately and
it was very hard because you are living with someone
you haven’t told and to take this medication either with
or after meals and some have to be kept in the fridge, so
I felt no it was too much for me, but I managed to do it’