Helping HIV/Aids refugees: Barnardo’s Health Through Action project

Juliet Ramage has a four-inch thick file on her desk devoted wholly to one woman and her three children. She flicks back and forth to the correspondence with the local authority, solicitors and others and, finally, to the judgement of the judicial review.

It was only after the review that Joan, an asylum seeker from Malawi, and her children, won the right to have money for food and utilities in their rented property. Joan and one of her children are HIV-positive. Until this judgement, their bills and rent were unpaid, council payments were erratic, and they had moved into one room in order to sublet other rooms to stave off eviction.

Barnardo’s Health Through Action project, of which Juliet Ramage is the service manager, is a 15-minute walk from the centre of Manchester. It was set up in 1995 to provide a planning, support and bereavement service working with 12 white families living with HIV.

There had been some contact with asylum seekers: in 2001 it worked with one family with an affected child but no infected children. By 2006, the number of families had risen to 89, including 26 infected children and 149 children living in affected families. They were refugees, asylum seekers or those who had no access to public funds and came from African states such as Burundi, Somalia, Zimbabwe, Rwanda, Ethiopia, Eritrea, Cameroon, Angola, Malawi, Zambia, and the Democratic Republic of the Congo.

Today, there are also 16 British and one Polish family, with a total of 33 children, six of whom are infected.

The story of Joan and her children – a tale of family separation, local authority inefficiency and destitution – is not unique. Some wait months, or years, for decisions about status. Their fears are not only about deportation to an unstable, dangerous country but to one where the chances of living with HIV/Aids, in the absence of easily available drugs, are enormously diminished.

The radical shift in the type of people who are now using the service came as a result of the government’s dispersal of asylum seekers. The project was alerted to the new needs by its own work at the treatment centre at North Manchester Hospital and by its partner agency The George House Trust, the country’s second largest Aids charity.

These families have also been moved frequently. One family was moved twice to Trafford from Dover and from Tameside, as well as twice within Trafford.

The premises into which the project moved a year ago are bright and well-furnished the walls are brightened by children’s drawings. It is part of an attractive terrace set behind a small, pleasant park.

“We can’t take away the stigma that adults feel, but the environment we offer is welcoming,” says Ramage. “But we have to be sure about when it’s safe to talk about HIV and Aids and when it’s not. It’s complex remembering which children know and which don’t. There are different parents’ groups, one where it’s ok to discuss it, another where it’s not and the same goes for groups for children. There is a group for young carers who know they have an additional responsibility for someone in the family but don’t know that arises from HIV.”

HTA offers a playroom, leisure activities, children’s groups, one-to-one befriending, and counselling. It also runs a crèche for the children of Chinese parents attending language courses at the Chinese centre next door, and is used by Sure Start.

There are between 200 and 250 HIV-infected children with insecure immigration status in the UK. There are no figures for children affected by the disease, but Magda Conway, co-ordinator of the children’s HIV Network at the National Children’s Bureau, suggests it is between 3,500 and 3,800.

HTA is the only group of its kind in the North West, and Barnardo’s has three other such projects. There are other groups in London and scattered elsewhere, but they are smaller and less well-funded.

Patience Moyo is an asylum seeker from Zimbabwe. Her daughter, Alice, is epileptic, has cerebral palsy and is HIV-positive. Her husband has disappeared into one of president Robert Mugabe’s jails. Her status means that none of the usual benefits – disability living allowance and carers’ allowance – are available. She says that Alice doesn’t understand about her health or their legal status, but has grasped that there is some significance in the word “papers”.

For her, the project is about gaining support from meeting friends in the same situation. Not allowed to work, she volunteers at the centre and as a trustee of the George House Trust while her daughter is at her special school. “This really helps me psychologically,” says Moyo, who worked in banking in Zimbabwe. “I am a professional person and I have always worked. Here, you are expected to sit at home all day, and that affects you psychologically. All I want to do is contribute something to society.”

Ian and Ruth Phiri have a 15-year-old daughter, Faith, who is HIV-positive. Faith became ill when she and her mother were on a family visit in 1998. Her father joined them while returning on a trip from the US in 2001, intending that the couple meet briefly before he returned home. But a test taken during his stay in the UK confirmed that he, too, was HIV-positive. They have three other children in Zambia, but returning home and staying alive and well are not compatible. They have applied for “leave to remain” on compassionate grounds.

Faith was told of her HIV status two years ago. Her mother says: “I think she always knew that something was going on but when she was told she was very sad, very quiet. She was sulky and expressed some fear but she’s now come to accept it. But when anyone comes, she makes sure all her medication is in my room. She doesn’t want people to know.”

Faith’s mother, who formerly worked for the UN, now works voluntarily as a neighbourhood mediator. Her husband, an engineer, has trained as a mentor. Both are barred from paid employment.

Without explanation, the council recently told Mr Phiri that the family’s £94-a-week cash allowance was to be cut. He walked three miles to collect £46 worth of food vouchers and then four miles to the supermarket, and the same distance home with the shopping. He has now been given a bus pass. Three weeks ago, his GP gave him £40. “It shouldn’t be like that,” he says.

We are repeatedly told that every child matters. But Faith, like others in her situation, seems to matter less than most.

* The names of all children and parents in this article have been changed.

➔ For more information about Barnardo’s Health Through Action project, call 0161 273 2901 or e-mail healththroughaction.project@barnardos.org.uk  

➔ For more information about the children and young person’s HIV Network at the National Children’s Bureau

This article appeared in the 28 June issue under the headline “A lifeline for HIV families”