Joint force to provide a safe space to share

Published on Monday 20 July 2009 19:00

PEOPLE don't realise how hard it is to say, 'I am living with HIV'," says Martha Baillie, the senior manager of community projects at Edinburgh charity Waverley Care. "While it might not be such a profound physical disability, in terms of mental health it can be quite difficult. People are living with something that shuts them off from everybody else."

Sitting in her office in Edinburgh, she is discussing the challenges faced by the people living with the disease her organisation meets every day.

As she talks, it becomes clear that, aside from the terrible health costs associated with a condition that continues to devastate lives in Scotland, the most significant problem people living with HIV experience is society's continued hostility towards them.

"When people say to others, 'I am living with HIV,' you can bet your bottom dollar that what is going through the heads of the people they are talking to is, 'How did you get it?'" says Ms Baillie. There is a judgment there. If we can get to a place when that doesn't matter, then we can begin to shift the stigma.

"If the stigma wasn't there, people would feel much happier about using mainstream services and a lot of the mental health issues wouldn't be there," she says. "So much of it is about how people see you, fear of rejection, feeling bad about yourself, carrying a huge burden. If the stigma wasn't there, yes there would be people with individual needs, but there is no reason why they couldn't be met more widely."

She adds: "It's not as overt as it was – I remember walking round Edinburgh in the mid-80s and seeing 'Aids scum' on walls. You don't really see that any more."

Ms Baillie is speaking on the eve of a major funding announcement by Waverley Care and Terrence Higgins Trust Scotland. The charities have been awarded more than 750,000 by the Big Lottery Fund to increase support and information for people with HIV and hepatitis C across Scotland.

Working in partnership, the organisations have launched a project, Positive Scotland, that aims to help people living with the diseases during transitional periods in their lives. Practically, this means offering support during the trauma of diagnosis, as well as help getting back into work or training.

More support will also be available to families of those affected, and the project will make a conscious effort to reach out and help older people diagnosed with HIV.

Ms Baillie, who will manage the funding of the project, explains that this demographic will have to be increasingly considered by those offering HIV support: "People are living much longer than anticipated," she explains. "People that might have been diagnosed 25 years ago are getting into their sixties. Or, increasingly numbers of people are being diagnosed much later in life.

"There is an assumption that it is 20 or 30-year-olds that are diagnosed, and that is not the case. There was some understanding that gay men were diagnosed later, but we are working with women who have been diagnosed in their fifties and sixties. It is about looking at an ageing population and recognising ageing with HIV would bring its own issues, but also that agencies that work with older people would not particularly be geared up to work with people living with HIV."

One of those affected is Mary, a 69-year-old great grandmother from Edinburgh who comes to Waverley Care's Isis group for women each week.

She was diagnosed HIV positive two years ago, and speaks enthusiastically about the support she already gets from the charity.

"If it hadn't been for that I think I would have faded away," she says. "It's very difficult. I live on my own and my family are all working, and they have their own children and grandchildren. They can't be with me 24/7. I am fine now (being on my own], but in the beginning I didn't bother getting dressed some mornings."

Waverley Care will run the HIV services in Edinburgh, the Lothians and Fife, Terrence Higgins Trust (THT) Scotland will take the lead in the West, Highlands and Grampian.

THT Scotland national director, Ailsa Spindler also welcomes the opportunity this funding will give both organisations to help older people: "One of the things we have been increasingly aware of because of the improvement in antiretroviral therapy is that people now, who perhaps become HIV positive but don't know about it, because late diagnosis is still a problem."

"The first thing they know of it is when they start to succumb to HIV related illnesses. They start on antiretroviral treatments, and within sometimes months, they are back and quite healthy and ready to carry on with life and get a job. A big part of this project will be to support them through that transition."

Aside from increasing support for an overlooked group, the project, which will be up and running by October, will help Waverley Care and THT Scotland improve the reach of their existing work.

"We are conscious of our limited resources," says Ms Baillie. "I think we do what we do pretty well, but we're often not able to meet needs as quickly as we might want, or in as much depth."

For Waverley Care, their commitment involves working with employers and employers' groups, offering advice on how to deal with HIV positive workers. In addition, the team works with families of those living with the disease.

"We already do a lot of work with children and young people, but what it will allow us to do is more work with other family members, who often may be the main point of physical or emotional care," Ms Baillie says. "Some of it will be about supporting a family member to do that as best they can. Some of it, particularly with a new diagnosis, will be about supporting family members to feel confident and informed about HIV.

"Often people talk about carrying this terrible burden of secrecy and shame, and often if they do share it with a family member, that also becomes something that family member can't talk about. What we offer is that safe space to share."

Case study

The pressure of managing a potentially fatal illness and dealing with the stigma of being HIV positive

ADAM, 59, was diagnosed HIV positive three years ago.

He agrees the stigma of HIV impedes the work of fighting the disease, and says this represents the biggest single challenge people with HIV face. "It's ignorance" he says. "I live outside Edinburgh, but because of the stigma that goes with being HIV positive I won't go to my local HIV clinic. I come into Edinburgh to attend the clinic. I have friends in Edinburgh who go to London because of the stigma, and they are frightened people will see them going into the hospital.

"I have no problem coming into Edinburgh and I have a very good relationship with my local GP – he is fantastic, so I can turn to him. I have a very good consultant in Edinburgh."

For Adam, the stigma is not just in relation to the reaction of strangers. "My immediate family have disowned me completely," he says.

"If my father had been still alive I don't think it would be allowed to happen. My mother passed away in January, and I didn't even have the opportunity of saying goodbye to her – I just had to go down to the funeral. I have no communication with my sibling or nieces or nephews.

"I have confided in cousins and they don't have any problem and they are disgusted with my immediate family. There is a whole lot of things that come into like my mother was a very staunch Roman Catholic. She struggled with my sexuality. I know other people with HIV whose families have been fantastically supportive. One of my best friends was diagnosed with the virus over 20 years ago and his family have been totally supportive. Every case is different."

Adam believes older people with HIV have been neglected by mainstream support.

"I was told, right from the offset when I was diagnosed, that as long as I lived a healthy lifestyle and adhered to my medication there was no reason why I shouldn't go on to live quite a long life," he says. "That is what my plan is – I live a very healthy lifestyle.

"But there is going to come a point that I am going to need extra help. I am not going to be able to look after myself forever."

"My message to anybody living with HIV is try not to think of yourself as a victim, try to think of yourself living with an illness that is manageable.

"If they have a problem and they need help, there are people, either at Waverley Care or elsewhere. Scotland is very fortunate they have Waverley Care."