HIV and Aids hospice Waverley Care marks 25 years

Anne Lamarine. Picture: Julie Bull
Anne Lamarine. Picture: Julie Bull
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‘I THOUGHT, ‘I’m going to die’. That’s all I kept saying.” That was March 6, 2008. Anne Lamarine, who had suffered recurrent bouts of pneumonia and skin complaints leading to her being sent for a blood test, had just been told that she was HIV positive.

Having never used drugs, the words came as a sickening bolt from the blue. Like most people with HIV, she had contracted the virus through unprotected sex.

“I was devastated, there are no other words for it,” the Wester Hailes mother-of-two adds.

“It was a terrible shock. I thought the doctor was going to say I had cancer.”

Not long ago, the words would have meant a death sentence, but no more. Remarkable advancements in the treatment of HIV mean that someone diagnosed in 2014 can expect to live a long, healthy life.

Not that being one of an estimated 4500 people in Scotland diagnosed with the virus is easy.

“My life is better than it was six years ago because of the drugs I’m on,” Anne, who takes daily medication, says. “But you can’t get away from HIV. There are constant reminders. I do get depressed now, before I was fine, an outgoing person. Now most days I just stay in the house.”

Now 49, Anne will soon become one of more than 1000 people in Scotland aged 50 or above with the infection.

In 2003, just one in eight people living with the virus had reached their 50th birthday. By 2012, it was one in four and the numbers are rising all the time.

The speed of the progress in treatment for HIV, which means that with early diagnosis very few people will go on to develop Aids, is an incredible success story. But it has presented new challenges as people survive for decades with the condition.

The rapidly-changing picture has meant that support services have had to evolve, to keep pace with the needs of those living with the virus.

City-based charity Waverley Care was set up in 1989, in response to a disproportionately high number of cases that led to Edinburgh being dubbed “the Aids capital of Europe”.

Then, it largely provided end-of-life care to dying patients. Today, 25 years and one day since the first meeting of Waverley Care, it responds to those with HIV in an altogether different way.

The evolution is personified at Waverley Care Milestone, in the south of the city, which opened its doors in 1991. Then, it was Scotland’s first purpose-built Aids hospice, a development so significant that it drew a visit from Princess Diana shortly after opening.

Now, though, it operates as a residential outreach and support centre, also helping those with Hepatitis C. Following a near £500,000 refurbishment, it is expanding services and instead of caring for the dying, is tailored towards helping people achieve what would have been unthinkable a few short decades
earlier.

Anne, who visits the centre weekly for a support group and also stays at the ten-bed unit for respite care, is clear that Waverley Care has transformed her life following the dark days in the aftermath of her diagnosis, when she struggled to eat for weeks after coming down with yet another bout of chronic pneumonia.

“I come down to Milestone every Thursday for the women’s group,” she says. “You just get a laugh. If I stay for respite care, I always leave with a smile on my face.

“You can ask something and someone will say ‘that’s what happened to me’. People understand you because they’re living with the same thing.”

The peer support is invaluable, particularly as broad attitudes across 
society have not progressed at nearly the same rate as treatment of HIV.

Many are still ignorant when it comes to the virus, with a Waverley Care survey recently revealing that 11 per cent wrongly believe it can be passed on through kissing, while more than one in six think it can be transmitted by spitting.

While fortunately it is not something Anne says she had experienced, people known to have HIV can also face discrimination and alienation.

“I’ve always told people, I didn’t hide it,” Anne says.

“At first people couldn’t believe it and said if anybody didn’t deserve it, it was me. But it has happened to me, it’s just one of those things.

“It was a huge shock to the family. I’ve got two sons, they were in their early 20s at the time so they were devastated when I told them.

“But now everybody knows I’ve got it and a lot will even come up to me for advice. I tell them to go for a test.

“I’d also tell people to use condoms – that’s a big thing. I never listened but people should listen.”

The refit of Milestone, paid for by NHS Lothian and the city council, has been today hailed as “extremely significant” by Waverley Care.

It is hoped that the improved facilities in what is the only specialist residential unit for people with HIV in Scotland will have benefits far beyond its walls, preventing hospital admissions and speeding up discharges, easing strain on the NHS.

Grant Sugden, who joined Waverley Care as chief executive in November 2011, says the centre offers a “safe, secure, community environment” aimed at helping users reach their full potential.

He says: “Edinburgh had a particular problem, that’s why we were established. At that point, it was about end-of-life support and helping to manage what was a terminal condition. People expected to die so we provided services to support them through the process, and their families as well.

“Now, it’s a very different outlook. We have effective treatment for HIV – if people are diagnosed early they can live almost to a normal life expectancy, taking maybe one or two tablets a day. A lot of our services have shifted, now we’re about helping people live healthy and fulfilling lives.”

While he says the huge progress in treatment is “something to celebrate”, Mr Sugden says it has also presented new challenges while some of the older ones remain.

He adds: “Some people we’re supporting now didn’t think they would be living now. For those who have been diagnosed in the long term, a lot of people they’ve known will have died so they may not have a peer group around and be worried about changes around growing old. It’s a journey into the unknown because we don’t really know what the consequences of long-term exposure to HIV and the medications are.

“Something like 22 per cent of people living with HIV are undiagnosed, and there’s still a big challenge around encouraging people to get tested. The stigma is still around too.

“People are talking much more about a cure for HIV being a possibility. We all hope for that, but now our services are still very much needed.”

HIV and Aids: from millstone to milestone

1982: Aids is reported in several European countries, including the UK. Terry Higgins is one of the first people in the UK to die of Aids.

1984: Scientists identify the virus, which will later be known as HIV, as the cause of Aids.

1985: The UK Government commits millions of pounds to the fight against Aids. HIV testing is introduced in the UK.

1987: Princess Diana opens the first HIV ward in a UK hospital and is photographed holding the hand of a patient with Aids.

1988: World Aids Day is established.

1989: Waverley Care is established in Edinburgh.

1991: Princess Diana becomes a patron of the National Aids Trust. Queen singer Freddie Mercury, 45, confirms rumours he has Aids and dies the following day. Waverley Care’s Milestone –

the first UK’s first purpose-built Aids hospice – is set up in the Capital.

1995: More than 25,000 people in the UK are now living with HIV. A new class of HIV drugs is made available, paving the way for effective treatment.

1997: Antiretroviral therapy leads to a rapid fall in deaths among those living with HIV. Trials for an HIV vaccine begin.

2003: HIV drugs become more affordable for developing countries. Results of the first major HIV vaccine trial show promise – but are later shown to be ineffective.

2006: The number of people living with HIV in the UK is estimated at 73,000.

2009: President Barack Obama announces the removal of the travel ban that prevents HIV-positive people from entering the United States.

2014: Waverley Care, now providing services throughout Scotland, marks its 25th anniversary.

ACKNOWLEDGING THE PROBLEM WAS A FIRST STEP

WAVERLEY Care was set up in 1989 following an explosion in cases in the city. Edinburgh had been dubbed the “Aids capital of Europe”, with the high numbers attributed to the popularity of heroin in areas including Muirhouse, Pilton and Sighthill. At one time, it was believed that a third of all heroin addicts in Edinburgh had HIV.

However, through the work of bodies such as Waverley Care, the city shook off the tag. Needle exchange programmes, education and high-profile campaigns were credited with a fall in new cases. The city also set up its pragmatic approach to the sex trade – in the licensing of saunas – partly in response to concern over HIV.

However, the Lothian region still has a relatively high number of people living with HIV, compared with the rest of Scotland. The latest figures show that last year, there were 1465 people in Lothian diagnosed with HIV, out of a population of 850,000.

In the Greater Glasgow and Clyde area, which has a population of more than 1.2 million, 1383 were living with HIV in 2013. However, in the Glasgow area 121 people were newly diagnosed with HIV in 2012, compared with 89 in Lothian, of whom four were diagnosed as a result of injecting drugs.

Professor Alison McCallum, director of public health and health policy at NHS Lothian, said today that the refurbishment of Milestone marked an “exciting chapter” in the facility’s history and would help those with HIV and Hepatitis C “lead independent and fulfilled lives”.