Public Services Management: Milestone in fight with Aids: Liza Donaldson visits a region in the vanguard of meeting the needs of a growing population of men and women infected by HIV

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The Independent Online
'I THINK Milestone House is brilliant,' says Ian. His face gaunt, his words slurred by drugs, Ian is a 33- year-old Aids sufferer watching time run out. He explains how he contracted Aids from drugs - 'at first we were all joking about getting the virus, then people started getting ill' - how he has a young son and how he saw his two brothers, aged 30 and 28, die of Aids last year. He does not know how his mother, his only surviving parent, coped. But one thing is for sure: Milestone House, the only hospice for continuing care of people with Aids in Scotland, has helped and is helping him through.

The single-storey, purpose-built building of honey brick, dark wood and airy rooms, set in an Edinburgh coppice, harbours a hope for public and voluntary services alike as an exemplary model of how to respond to a modern problem. Yet it is only part of a whole spectrum of services to deal with Lothian Region's epidemic of HIV/Aids. Together they hold out lessons for councils, health chiefs and the voluntary sectors, particularly given the official predictions this week of 'a steady increase in new cases of Aids among heterosexuals'.

Edinburgh and Lothian Region are in the vanguard of meeting the needs of a growing population of men and women infected by HIV and Aids because the area had a huge drugs problem which helped earn it the tag 'Aids capital of Europe'. A massive upsurge of the infection in the mid- 1980s among heroin injectors in Edinburgh has left the region with 52 per cent of the 1,921 HIV cases identified cumulatively in Scotland between October 1985 and March 1993. Since most in the region caught the virus from drug injecting, unlike the rest of the UK where homosexual/bisexual men are the main population infected, that meant men, women and children born to HIV-positive mothers were infected and affected. The HIV/Aids Strategy for Lothian, drawn up in December last year by a consortium of statutory and voluntary bodies, says support services for drug users, women and children are very important and that 'large-scale heterosexual spread is judged to be a threat that must be taken seriously'.

At Milestone, the director of the hospice trust, Roger Kent, explains how it is unique in a number of ways, one of them being the high number or children visiting and staying with infected parents or relatives. Approaching the building, Mr Kent points out that the first sign announces the hospice, while the second warns: 'Caution - children playing'. In a comfortable sitting room, which turns out to be the ante-room to a small morgue, he adds: 'We try very hard to fight the image of a death house.' The hospice places the emphasis on living with HIV positively, and the dead are remembered in living trees planted near by. Meanwhile, the coming generation is catered for with nappy dispensers in the hospice lavatories. The 20-bed unit provides terminal, convalescent and respite care at a cost of pounds 200 a bed a day when it is three-quarters full. Sixty non-

uniformed staff and two social workers liaise with a clientele of 200. One- third of admissions are women, such as Janie, staying for respite care, a former drugs user who has lived through the hell of her daughter testing HIV- positive as a newborn baby, and the heaven of her testing HIV-free at 18 months old.

The hospice opened in February 1991 and was visited shortly after by the Princess of Wales. It cost pounds 2m to build, a third of the cash provided by Lothian Health Board, a third by Lothian Regional Council and the rest from donations. Its running costs of pounds 1.2m are similarly apportioned. Mr Kent, the former director of social work for the region, has seen the project through from its inception, originally the concept of the charity Scottish Aids Monitor (SAM), which planned a hospice for Aids sufferers at Torphichen in West Lothian to be 'a milestone in the fight against Aids'.

The plans were derailed in 1987, when a public meeting in the village turned into a near-riot. A fearful, furious public stoned officials as they left. Mr Kent, who had witnessed the plight of people with Aids in New York living rough on the street, persevered. The new Milestone succeeded, he believes, because this time round its movers were pro-active, anticipating controversy, leafletting the area, informing the public and liaising with the nearby secondary school.

These relationships have blossomed. Mr Kent says: 'We know our place in the continuum of care. Milestone is typical of the response to HIV in Edinburgh. I have had a lifetime of public service and I have never known co-operation to be as intense as it is in handling services for people with the HIV virus.' Milestone, he believes, could serve as a model for the way other services might operate.

His successor as regional director of social work, John Chant, admits that the health board's HIV/Aids and drugs budget of nearly pounds 1m and the region's pounds 2.5m are not enough to meet needs. Services for HIV/Aids developed with equal participation by the voluntary and statutory sectors. A strategy to manage them evolved afterwards, he explains. This has resulted in 'a rich tapestry of ad-hoc projects'. Mistakes were made along the way, but it was a case of 'managing the unmanageable', especially early on, when so little was known about Aids. On the flip side: 'One of the triumphs and achievements in Lothian has been to sustain the integration of people with HIV/Aids.' The small number of children who are HIV-positive have been dealt with through the normal social services facilities like children's centres; at least one has been adopted by parents who dote on him, others fostered. Something like 500 children going through the council's schools are affected by parents or relatives with the virus. Staff at every level had to be sensitised and trained beforehand. People with full-blown Aids are enabled to live in the community far longer than they would otherwise be enabled to do through the council's Supported Accommodation Team, which has 35 beds available, including those for children. Its six staff are in effect on call round the clock, providing a roof over heads of families and individuals booted out by relatives, as well as emotional support, counselling, welfare rights advice, and home help.

It is services such as this which lead councillor Brian Cavanagh, chair of the joint co-ordinating committee on HIV/Aids, to claim: 'With 75 per cent of HIV-positive people in Lothian in their own homes, we have been working in advance of the community care coming on stream in April.' He points to the other main raft of the strategy, which aims at prevention. The region's HIV/Aids education team, for example, works in schools, using explicit material and speakers with HIV, even at primary level. Outreach workers help prostitutes, and sex workers protect themselves and their clients, encouraging safe sex. He believes the result is 'a very good example of two statutory agencies (health and council) working in partnership with each other and the voluntary and user groups. We have a model worth exporting.'

Mr Cavanagh adds: 'The Government has made an error in thinking HIV is under control. Heterosexually spread Aids is a major growth area. It requires a major campaign.'

Real names of victims have been changed.

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