Secret tests reveal HIV crisis: Lynn Eaton looks at how Newham is dealing with the growth of infection in pregnant women

Lynn Eaton
Monday 20 June 1994 23:02 BST
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Newham has the highest proportion of HIV positive pregnant women in England. Confidential results of anonymous testing in the borough's antenatal clinics by the public health laboratory service, obtained by Independent London, show that one in every 196 women is infected.

This is more than twice the average level of infection in other London boroughs and nearly 40 times the figure for England and Wales.

The figures have surprised health professionals. Although a growing number of women are HIV positive in east

London, Newham's rates are much higher than in neighbouring boroughs.

In Hackney, one woman in every 593 is HIV positive, while in Tower Hamlets the rate is one in 1,322. The average for London is one in 475, although the incidence varies enormously from borough to borough. Outside the capital, the rate is one in 7,582.

Analysis of Newham's HIV group has revealed that a significant proportion are female, of African origin.

Newham social services director Deborah Cameron said the problem had put an enormous strain on her department, which has to find childcare support for the women, many of whom are single parents.

In several cases the women have already watched their husbands die from Aids.

'Before anonymous testing was introduced, there were not many adults in Newham known to be HIV positive or have Aids,' said Ms Cameron. 'We were not seen as a priority area.'

But they are now. The Department of Health has just given pounds 58,000 towards a specialist project for the four east London boroughs - Hackney, Tower Hamlets, Waltham Forest and Newham - to co-ordinate services. Between them, the four are helping at least 140 children whose mothers are infected.

Whereas in west London services are well developed for gay men with Aids, east

London is dealing with a very different group of people. Not only are they women, but the majority are African, living in poor housing and often with many children. One-third of the women are refugees.

Their needs are very different from those of single gay men. These women need a range of support services, including baby-sitting, respite care, weekend care and longer-term fostering or adoption arrangements when they can no longer care for their children.

Since April, Newham council has had 80 new cases referred to them of people who are HIV positive. At least ten were children infected by their mothers, said Ms Cameron. The council is already working with 50 children from 40

different families.

She believes the virus is spreading through sexual intercourse rather than through drug users sharing infected needles. That, combined with the high number of teenage pregnancies in the borough, makes her even more worried that the rates will continue to rise.

'The Newham population is multi-ethnic,' says Ms Cameron. 'But this isn't just an African problem.' Newham is second only to Brent in having the highest proportion of ethnic minority communities. Although 60 per cent of the population is white, about one in 17 in the borough is black African, one in 14 Afro-Caribbean, and one in 14 is Pakistani.

Although the HIV positive women in Newham are mainly African, other racial groups - including whites - across east London are also affected.

But what unites the women, no matter what their background, is their worry about what will happen to their children.

The women may feel fine one day, but very ill the next, so services have to be flexible. If the women are receiving treatment, they will have to travel miles with their children to get to hospital.

The children may also need permanent care eventually, once a woman is no longer able to look after her children.

'We are looking at developing everything, from someone coming to a home to babysit, going on to be a foster carer, right through to possible adoption,' says Ms Cameron.

'The women get anxious about the quality of child care. They want someone who will understand their child's needs.'

One-third of the women known to the four boroughs are refugees, many with English as their second or third language. Many are still unclear of their asylum status and are terrified their children may be returned to their country of origin once the mother dies.

This, along with their fear of any contact with the authorities in case it jeopardises their claim for asylum, prevents many women coming forward for help until already very ill.

The Government began routine anonymous Aids tests in 1990 on people attending outpatient clinics, including antenatal and sexual disease clinics, to monitor trends in the population.

Throughout the UK there have been 727 reported cases of women with Aids since 1982, when statistics were first recorded. There have been 8,298 men with Aids in the same period.

In the past two years, the number of women known to have Aids has increased by 44 per cent.

The number of people who are HIV positive is far higher: 18,760 cases since October 1984 up to March 94, 2,910 of them women.

MARY CARES FOR HER SON - AND WAITS FOR DEATH

Mary, a 31-year-old African, found out five years ago she was HIV positive. She is typical of the women Newham is dealing with - a single parent and refugee.

'There was just that feeling I was probably going to die tomorrow. It was the end of the world,' she remembers.

The first thing she thought about was her son, Paul, then five years old. 'I didn't know what to do with him. I was alone with him in England. What was going to happen to him? I picked him up from school, cooked for him, put him to bed. But then I broke down and cried.'

Mary, who came to Britain in 1989, had no one to turn to. Most of her relatives were abroad and she did not want to tell her partner, Paul's father, as she felt sure he would turn it against her. (They have now split up.) Mary decided to have the test after having an abortion.

She feels her son Paul must have suffered during those first few weeks, when she had no help. 'I wasn't very happy. All the time I was worrying about my own health and about him. When I went shopping, I would just buy clothes for him because I thought I didn't need things. I went through a very stressful time.'

Her sister visited from abroad to make sure Mary received the treatment she needed. Mary now attends Positively Women, a national centre for women who are HIV positive, where a worker offers special support to women with children.

Mary has had remarkably few illnesses and manages to hold down a full-time job. But she often feels the need for a break from caring for Paul.

'Sometimes I feel I want to be alone. I tried to arrange respite care for him but it was refused because I was quite well. Social services are still not aware that women need help early on, when they are well enough still to be able to decide for themselves.'

She also thinks it is important the children

are placed in families from the same African background.

Mary wants Paul to be aware that people can die at any time. She also tries to encourage him to be as independent as possible.

'I've tried to explain to him what you experience when you grow up - cooking, shopping, looking after the house - and that there may become times when it becomes too much for me.

'I have waited so long for my death, but it never seemed to be coming. I've decided I'm not just going to sit here waiting. Knowing my life is short, I want to be there for Paul, to live life to the maximum in the short period I know I will be able to survive.'

Positively Women can be contacted

on 071-490 5515.

(Photograph omitted)

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