HIV charity looks back at how attitudes have changed after 30 years in Edinburgh

Positive Help was founded in 1989.

Sunday, 1st December 2019, 7:45 am
Staff members and trustees celebrated the anniversary of the charity. Picture: Positive Help

An Edinburgh-based charity celebrated 30 years of providing practical support to people in the city living with HIV ahead of World AIDS day today.

Positive Help, founded in 1989, offers services including transport, help around the home, and mentors to those living with the illness in Edinburgh and the Lothians.

The charity hosted a party for staff members, volunteers, trustees and service users this week, and will continue the anniversary celebration until the end of the year.

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Special cupcakes marked the anniversary of the charity. Picture: Positive Help

“With 30 years of experience, this charity really knows the community we serve,” said CEO Gillian Frayling-Kelly.

“In the past our work may have been about end-of-life care, but now it’s much more about support for mental health, and in taking medication.”

Medical research has moved on so much since 1989 that a person living with HIV and on effective treatment now cannot pass the illness on through unprotected sex.

Results of the landmark PARTNER study in 2016 showed that if an HIV positive individual is on effective treatment which reduces the virus to ‘undetectable’ levels, the virus is untransmittable. This is known as ‘undetectable = untransmittable’, or ‘U=U’.

The results were reenforced by a follow-up study, PARTNER 2, released in May this year.

In the first six months of Positive Help in 1989 the charity had requests for support from 39 adults, and was the only charity at the time to prioritize the 19 children ‘presumed infected’ with HIV.

The organisation has grown from 13 volunteers in 1989 to over 70 volunteers supporting 250 service users today.

In 2012 Positive Help also expanded services to include those living with Hepatitis C.

Chairman Ray de Souza said: The people we set up to serve in 1989 – people living with HIV / AIDS and their families – were not in favour back then, to put it mildly.

“They were heavily discriminated against, isolated and they experienced unimaginable prejudice and abuse within their communities.

“All that on top of the complex health and social problems they were experiencing. Little nowadays compares to the context back then, thankfully.

“Harassment and prejudice towards people living with HIV and their families still exists, if on a more covert and lesser scale, but they are unacceptable nonetheless.

“These experiences of service users of all ages continue to influence the way we work with them and design our services to acutely focus on meeting needs and providing sensitive, quality services.”

Carl, a Positive Help service user who was diagnosed with HIV 28 years ago, has found that attitudes towards his illness have changed considerably since then.

He says he is ‘one of the lucky ones’, as his partner and many of his friends were killed by HIV-related illnesses, but things have not been easy for Carl.

His extended family refused to keep in contact with him for a long time as they did not understand how HIV is transmitted, and would not visit his home.

Now attitudes towards the illness have changed, and Carl’s family visit him and keep in regular contact.

But they still treat Carl differently because he is living with HIV, and he notices that even though he always makes sure to have a pristine bathroom and fresh guest towels when family visit, his family still will not use his towels.

Carl began using Positive Help services in 2002, getting regular transport and help around the home.

He often says how pleased it makes him to see volunteers drinking from his cups, as in the past due lack of awareness and stigma around his illness even this was a rarity.

“It’s surprising the amount of stories we hear where someone is still being stigmatised because of living with HIV,” said Ms Frayling-Kelly.

“Attitudes to HIV have changed but there’s a huge amount of work to do - we really need to get the U=U message out, I’m surprised how many people are not aware of that.”

Ms Frayling-Kelly says the charity is expecting more demand for its services in future, as many people in the city living with HIV are in their 70s and 80s.

“Many feel vulnerable and isolated,” she said.

“We’re looking at developing our support services to reduce isolation and ensure they can live as full a life as possible.”

Eilidh, a volunteer with the charity, said: The one-to-one contact that I have with clients really gives me so much – helping someone with their cleaning and working with them to look after their home provides me with the chance to see how my efforts are really making a difference to someone’s life.

“I really enjoy talking to the clients and volunteering for Positive Help offers something so immediate and satisfying.”

Positive Help is currently looking for new volunteers. Those interested can apply via the website at www.positivehelpedinburgh.co.uk.