Sunday, August 3, 2008


'It's a place I can go for a hug'

Paul Steinberg, BBC News

I don't know what will happen to us when we don't have this safe place to visit."

Eighteen years ago, aged 28, Maria was diagnosed with HIV.

Given just five years to live, she became depressed and lost her job and desperate to escape the negative reactions of her family and friends, she moved from her home-town of Madrid to Brighton.

"I didn't think I'd reach 40. Even when I came here and started working, I felt constantly sick, depressed and lonely."

But almost two decades on, Maria is alive and relatively well and about to enter the final year of her degree in fine art.

Her health has also improved, thanks to anti-retroviral medication.

Closed door
She has benefitted from the emotional and practical support of staff and volunteers at Open Door, a charitable day centre located in a discreet terraced house by the seaside.

It currently assists more than 200 people with HIV and Aids from across Sussex.

But the centre, which began its work in the mid-1980s at the height of the Aids crisis, is set to close this autumn.

It is not the only such service under threat. Others are closing or merging, which campaigners say is a sign of the changing nature of the HIV epidemic in the UK.

As drug therapies improve the prognosis of people with HIV, and the provision of support services takes lower priority.

For regular clients like Maria, however, the closure makes no sense

"With the statistics showing HIV infection increasing in Brighton, it seems crazy to close it down."

People who use the centre have written to the Diocese of Chichester, which owns the premises, as well as to local HIV commissioners and MPs, urging them to intervene in the planned closure.

Maria said: "I've used this service for almost a decade. One time I came in for lunch and I felt out of sorts, but thought I was just having a bad day.

"As soon as the staff saw me, they knew something was wrong. They arranged for an emergency taxi to the hospital as I was so ill. So many times, they've saved my life."

With HIV costs soaring as a result of effective - but expensive - combination drug therapy, health commissioners are being forced to make difficult decisions about funding for services like Open Door.

'I'm not judged'

But Maria said: "Just because we have drugs now, it doesn't mean we're not suffering. Sometimes I just need a hug."

"This is the only place I've found people who care about me and don't judge me for being HIV positive.

"I can be myself without worrying about people's reactions, and it's where I get the help, love and support I need to stay alive.

"Just being able to talk to other people in the same situation can be as helpful as seeing a counsellorOriginally set up in his home by the late Reverend Marcus Riggs, Open Door has continued under the auspices of the Diocese of Chichester, funded by the NHS and Brighton City Council.

But, announcing its closure, the diocese said there had been a decline in demand for such drop-in services.

Reverend Barry North, from the diocese, said: "The decision to close is very regrettable, but the demand for services has changed, as the nature of living with HIV has also changed.

"Open Door tried to respond to this challenge over recent years, but it was increasingly clear that the current set-up was not suitable twenty years on."

It had originally been decided to move the project to new premises, but in the end the costs involved were deemed to be too high.

'Still ignorant'

Maria says this is short-sighted.

"All the emphasis in recent years has been on us going back to work and study.

"That's fine, but we still need support when we're having problems with our health or finances.

"If they only run a drop-in one day each month, it's very difficult to fit that in around other commitments."

And she said support was harder to find when someone had HIV.

"If you go to a supermarket and feel dizzy, you can tell people 'I have cancer' and they'll be sympathetic.

"But if you tell them you have HIV, they'll run away. People think you're a potential bomb just waiting to go off and infect them.

"Even in the 21st century, the world is so ignorant of HIV."
Changes in the way people demand and access services like Open Door reflect developments in the progress of HIV care in the UK. In the 1980s and early 1990s, gay men were the main group of patients with HIV infection.

When Open Door started, it offered a safe meeting place and counselling as well as practical help with things like laundry.

Since then, the so-called 'imported epidemic' of HIV-positive people from sub-Saharan Africa coming to live in the UK as well as effective drug treatments, have meant that services have had to adapt to the needs of increasingly diverse groups.

Now Open Door has to provide services ranging from interpreters to powdered milk for HIV positive mothers to give their babies.

Continued support

Robin Brady, chief executive of Crusaid, which provides funds to HIV organisations said: "Over the years, as the profile of HIV has changed, there has been a shift in the way services are delivered.

"We have to do something about the increasing level of new diagnoses we're seeing every year."

Reverend North said he hoped to continue providing some essential services in Brighton, particularly those targeted at asylum seekers and refugees with no recourse to public funds, and he said other organisations in the area should take over some of Open Door's work.

But Maria is less hopeful.

"We've written letters of protest but nothing has changed. It's as if the church has closed its doors on us without providing much alternative. It's a sad end to a great service."

The BBC's health correspondent, Jane Dreaper, will be reporting from the 17th International AIDS conference in Mexico throughout next week.

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