A support group is helping HIV sufferers in the North East educate the community

A lecturer at Newcastle University today talks about living with HIV and how he is working to educate the community about the condition

Professor of Music at Newcastle University, Paul Atinello who is HIV positive and has set up a support group for the North East
Professor of Music at Newcastle University, Paul Atinello who is HIV positive and has set up a support group for the North East

Sitting in his office at Newcastle University, Paul Attinello, a senior lecturer at the International Centre for Music Studies, is answering emails.

He’s busy organising international exchanges for his students to countries across Europe.

Born in Washington DC, he has lived in San Francisco, Los Angeles, Hong Kong and Sydney before arriving in Newcastle in 2002.

In between lecturing, Paul found time to establish the Patient Participation Team, a support group for HIV sufferers in the North East which aims to educate health care professionals – and the wider community about living with HIV in 2014.

Open and frank, Paul is happy to share his story of how he came to be infected.

Aged 22 in 1979, he left his home in Washington DC and moved to San Francisco.

“Just in time to be in the gun sights,” recalls Paul. “To be honest, I had a lot of sex after I arrived in San Francisco and it was unprotected sex. It was a fun time, I was singing in bars and just messing around. It was a carefree life. But, of course, it was at a time when we did not know what was happening. Nobody knew; nobody could.”

It was in 1983 that someone Paul had been in love with died from a condition that was beginning to emerge.

“And they died very painfully,” recalls Paul. “At the time the doctors understood nothing. This was something new, something new to everyone. I just remember watching as his body was falling apart – it was terrible.

“Before he died I remember him telling me to get out of San Francisco and to get myself a PhD.”

It was advice Paul took and he applied to the University of California in Los Angeles (UCLA) and got in.”

Paul said: “A week after he died, I left and headed for LA. It was when I was at UCLA that I was diagnosed with HIV. Did I think I was going to die? Of course.

“I decided there was no point in finishing a PhD. Why would I? I was going to die.”

This was 1987, a time when AIDS was causing worldwide panic and fear not just in the gay community, but across all sexualities, genders and geographical boundaries. The fear of dying would be foremost in Paul’s mind as the years began to pass.

He said: “To be honest, it wasn’t really until four or five years ago that my thought process changed from “I’m going to die” to “I’m going to live”.

He said: “I ended up going back and finishing my PhD before getting a job in Hong Kong. By this time Protease Inhibitors were around and that was making the world of difference. It was 1996.”

Protease Inhibitors are a class of antiviral drugs that have been widely used to treat HIV/AIDS.

The first drugs of this type were approved in late 1995/early 1996. Within two years, annual deaths from AIDS in the United States fell from over 50,000 to approximately 18,000.

“Today, my life expectancy is around the early 70s mark. And it keeps going up every year,” adds Paul. “For a newly diagnosed person, life expectancy is today the same as a person without HIV.

“But we do stress that we don’t want people to take this for granted. The message that we want to get out there is that ‘you don’t want this disease’. It’s still a risk.

“I really ended up identifying with this disease which was both a source of strength, but then as the years went on, a mistake, a limitation. Since coming to Newcastle in September 2002, I have found the people to be friendly and generous, however ignorance does still exist. There are still people who assume they can catch this by touching a door knob or by touching someone who is infected. Ignorance can be a tricky thing and in the North East it tends to increase as you move from the city centre.”

The Newcastle PPT (Patient Participation Team) was created to help educate health professionals, students and the wider North East community about HIV in the 21st Century. The group’s main activities have included presentations to medical students and personnel, the establishment of a listening service that offers patients a chance to talk to others who are living with HIV, and networking with local institutions and the community.

The group currently consists of about 20 people, of whom about 15 are active. Although gay white men are only about a third of HIV patients in the North East, they have been the most willing to get involved and speak in public, as they represent about two-thirds of the group.

However, the group’s African women and white heterosexual men and women have also been very active and articulate members, although one has recently returned to her home in Africa.

Paul Attinello, who is manager of the group, said: “We speak on a regular basis to medical students and occasionally to groups of psychology students, nursing personnel, or GPs. The usual pattern for such presentations takes up an hour and a half, during which three of us speak.

“After a brief introduction by the session manager, each of us simply tells their story – or, of course, parts of their story. Some days, for instance, someone will focus on how they were told of their infection.

“We then ask the audience to take a break and come up with questions – the rule being that they may ask us anything, but we can refuse to answer if we choose.

“The question-and-answer period is a lively discussion of many issues; feedback is overwhelmingly positive, the students claiming it was among the most interesting sessions of their entire degree.”

The group also runs a Listening Service, which is an opportunity for anyone with HIV to talk to a group member about their concerns.

The original idea was for people who had been living with HIV for a long time to offer support to the newly diagnosed, but in actuality a variety of people with different levels of experience have wanted to participate. Mr Attinello said: “Setting up the ground rules for one-to-ones was tricky, as it involves non-professionals managing what are basically therapy sessions.

“Rules have included scheduling the first meeting in a neutral space, along with other ‘boundary’ rules intended to protect both listener and speaker.

“However, so far, we have had no problems, and response from those involved has been extremely positive; perhaps because of the social isolation experienced by many patients in the North East, they are grateful for open and honest discussion.”

A major part of the group’s plan is to reach the HIV community to invite them to take advantage of our services, or to join the group.

Mr Attinelo added: “One of our members produced a coloured brochure that has been distributed in the area, and is working on the creation of a website specifically about the group and its news.

“Aside from our frequent contact with health care and psychology staff members, we maintain strong relations with local branches of Body Positive and MESMAC; the latter has organised vigils on World AIDS Day for the past two years.

“From my point of view as manager of the PPT, and as someone who has lived and worked chiefly in other countries and in major cities, it seems Newcastle’s chief problems are isolation and ignorance. Patients are frequently concerned about confidentiality, reflecting the lack of support they often seem to expect from family and friends.”

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