Background

In the late 1980's and early 1990's, both government and faith communities in London were faced with the reality of HIV, then an incurable and usually quickly fatal disease. There was growing statistical and anecdotal evidence that London was home to the largest concentration of people with or affected with HIV. A number of individuals (both lay and ordained) from within the Christian communities were actively involved with providing different kinds of both practical and pastoral support to people with or affected by HIV. They were aware of the climate of fear, prejudice and ignorance which adversely affected people with or affected by HIV and interfered with a proper understanding of and response to the this illness. Issues of sexuality, and theology made the response to HIV both one in which they believed the churches should take a lead, but also which caused confusion and sometimes judgement within their communities. They originally came together for mutual support and to discuss how these problems might be handled effectively in a number of ad hoc groups, such as the inter faith group of Terrence Higgins Trust, the Ministers' Group (an informal meeting of ministers involved with people with HIV and AIDS, and London Christian Action on AIDS. However, over time, all of these groups ceased to meet, although there was a general consensus that there was a need to continue meeting, but a shortage of resources to plan and organise meetings. Also the organised groups such as ACET, CHAI (Christians in Hackney AIDS Initiative) and others were striving to get their message across to and widen their support within local faith communities.

In London, the London Churches Group (the Group) was the body given the task of co-ordinating the official response of the churches (and at that time the Jewish community). The Group was an ecumenical group established by faith leaders within these communities to, "consider matters of social concern for London ....and to take appropriate action." In a number of areas such as employment and housing, to support the response in line with good practice and faith commitment to social action, the Group set up "units" under name which undertook detailed work and reported to the main group. The London Churches HIV/AIDS Unit (hereafter referred to as the Unit) was established in September 1990 and in 1991 it presented the briefing paper quoted from above detailing the view of its steering group and its Adviser (Brother Colin Wilfred, SSF) that the establishment of what would be known as London Ecumenical AIDS Forum would bring together representatives of groups, hospital chaplains, those appointed by denominations to work on this issue, and others within the Christian and Jewish communities in order to offer support, to share information and to identify needs and avoid duplication, as well as attend to the spiritual aspects of HIV need.

The London Ecumenical AIDS Trust

Late in 1992, Brother Colin Wilfred decide to move on and in July of that year the Unit’s management committee accepted the results of a management consultant’s review of its activities, which identified that the Unit should shift its primary focus from pastoral care provision to its activities on training programmes which helped local groups address prejudice and shape involvement in a non judgmental response. Continues its advisory role to church leadership, and publicise these services. It was agreed that the management group chaired by Dorothy Bell of the Congregation of the Sacred Heart and representative of the Roman Catholic Archdiocese of Southwark,  should set about seeking three further years funding from the denominations then funding it and appoint a director to take the work forward.

Reflecting the change, I (a lay person) was appointed director in February 1993 and with Sister Dorothy Bell and the Treasurer, Reverend (later Canon) Grahame Shaw, identified that some reform of both activity to ensure the focus would be on education, awareness, and ensuring a pragmatic, integrated non judgmental response to and funding would be necessary to advance the programme set out by the management committee. 

As the London Churches Group had no charitable or other clear legal status, it was agreed that, while remaining a work of the Group and with Sister Dorothy as a member of it, the Unit should be established as a charity which would allow it to receive funds from sources other than denominational funders, to include local health promotion, central government initiatives and religious and secular charity funders. As the name did not fully reflect the combined Christian and Jewish role of the Group and hence the Unit, after consultation, the name London Ecumenical AIDS Trust was settled on as the best (if imperfect) compromise and that further representation on the management board from within the Jewish community would be sought, although recognising the central role of the Jewish AIDS Trust (JAT) to provide many of the services within the Jewish community.

In October 1993, the new entity was registered as a company limited by guarantee and as a charity.  Its charitable objects covered the whole of London but were not so restricted in the document because the denominational structures which covered Greater London also stretched outside that boundary and it was considered inappropriate that denominational funders would be restricted in asking for support from LEAT to areas within the boundary.  The objects of the charity were (reflecting the intention of the Group and the work of the Unit management committee as well as the analysis of need) the support of people with or affected by HIV and AIDS, the education of the public ( a legal requirement for services to be open to all) about HIV and AIDS and the needs of people with or affected by it, and the advancement of religion by the promotion of ministries to people with or affected by it – the latter phrasing again reflecting the legal requirements for charitable status.

Activity 1993-1998

The management committee and the Director then reviewed the plan from 1992 and agreed to immediately undertake further assessment and listening, while providing three main services. These were (in the spirit of avoiding duplication) not aimed at the provision of pastoral care or health care already provided by ACET, CARA Catholic AIDS Link and others within the voluntary and state sectors. Their role was to support and enhance what was already going on and to encourage non judgmental responses within the context of existing local groups by way of fund raising and participation.

The three areas were:

A training and awareness programme taken to local churches (it was recognised that within the Jewish community, this local work was already undertaken by JAT).  This programme involved a number of activities, of which the most frequent was taking into local faith communities’ awareness raising events, often on weekend day to ensure attendance, but also talking to parish groups such as women’s fellowships. The days were focussed on not only the giving of information, but awareness raising in a faith appropriate manner using as far as possible  volunteers from within the faith communities who understood the language and beliefs of those attending.  This allowed sensitive handling of matters of sexuality and other areas where potential prejudice and fear might exist. Such events were already undertaken by other groups so planning was in consultation and aimed at using the official nature of LEAT’s sponsorship to encourage participation of local churches which would not necessarily otherwise take up awareness events.  Using the Ecumenical Borough Deans’ network established in each London Borough to promote the work of the London Churches Group’s various units, these days involved training about HIV, a chance to meet and hear the experiences of people living with HIV, and to receive written and verbal information about London and local initiatives, especially from within the LEAF membership. LEAT’s increased profile lead to over 100 queries a year from potential volunteers, and people with or affected by HIV seeking information and care who were as far as possible guide to the appropriate LEAF members. This work also involved assisting with the publicising of the Anglican Diocese of Southwark HIV policy and assisting in the preparation and publicizing of a similar policy for the Anglican Diocese of London, both work being collaborative with the Diocesan Boards for Social Responsibility.  As well as raising awareness with local groups, alliances were formed with other faith groups working with social issues where these issues were affecting HIV transmission, for example, with UNLEASH when the Director at an annual conference spoke at and facilitated a workshop about how homelessness affected transmission of HIV.

The preparation and organisation of an annual service to mark World AIDS day, an event promoted informally a few years earlier by a group of ministers and others involved in HIV related pastoral and other care . Initially small, with the help of a number of volunteers and support from the Anglican Cathedral at Southwark, this service grew and quickly attracted notice within the secular press and attendance rose to nearly 600 for the 1993 service. In keeping with the principle of involvement, LEAT undertook this work on behalf of LEAF, so as to further publicize the work already being undertaken within the Christian and Jewish communities. The service received generous support from LEAF members, both in terms of volunteers and (especially from CARA) financial help. More than once I met at the service families affected by HIV who had travelled long distances to obtain faith appropriate support free from the fear of prejudice and isolation - some family members maintained contact regularly on over the 5 years I was at LEAT. Now, it is hard to imagine how isolated they were, often in country places with prejudiced local faith communities to whom they felt they could not speak. They included not only parents, but also brothers and sisters of people with HIV, often dealing with the surprise and other feelings about a sibling's until then hidden sexual orientation and then quite quickly thereafter with the death of their sibling.

LEAF: quite early on it was apparent that LEAF did good work, but that there were individuals outside its membership from the faith communities who worked in HIV related provision, especially within the non faith voluntary sector, the NHS and social services. To enable them to attend a programme of regular speakers was initiated, allowing the approval of line managers for attendance, under the heading of professional development, and also responding to a feeling identified by LEAT that people of faith working within HIV did not always feel valued by their faith communities, which could ignorant and prejudiced against their client group. The wife of a minister who joined LEAF reflected that her HIV work with social services was something her parish viewed as work odd for the minister's wife and about which everyone appeared to prefer not to know. This gave her a sense of isolation within what should have been her supportive faith family. LEAF quickly grew in size and scope, and new connections were built up by members from both the statutory and voluntary sectors, as well as the providers of pastoral care.

The work described above benefited greatly from the generosity of the then Dean of Westminster, the late Michael Mayne, supported by his wife, Alison. He gave both the use of the Jerusalem Chamber and refreshments to LEAF for its meetings and chaired these himself, which added to the feeling of recognition for members and attracted good quality speakers, thus informing both members and speakers who learnt of the work undertaken by LEAF members and how their clients/patients could benefit from these services. The Dean had been a strong supporter of earlier meetings and worked with LEAT (under the LEAF umbrella) to publicize and organise evenings at the Abbey (again with the Abbey providing the generous food and wine) for a balance of people with HIV, those affected by it and careers both professional and voluntary. Those who attended felt valued and included and many reported to LEAT how much this meant to them, especially in this important national building. 

The outcome of all these activities led to further development of LEAT services. Early on it became apparent that LEAT, because of both its faith roots and its “official” nature was trusted by African communities in London. This was particularly helped by the contacts developed in pastoral care by Canon Shaw and others within the management committee and LEAF, and the contact and support for these communities became one of the main focuses  for the Director. Contacts were developed and this included the addition to LEAF of individuals and groups from especially sub Saharan Africa working in HIV related fields.  This reflected the special role churches have in the life of these communities, and supported access which was often denied to statutory or secular agencies.  Included in this work were awareness events aimed specifically at these communities, both in secular venues and local churches. A service for Ugandans in London was organised at Southwark Cathedral, by a team of Ugandan volunteers from the diverse and often politically separated communities. The service marked the visit of a bishop of the Church of Uganda who used the service to powerfully denounce from the pulpit prejudice and fear, speaking of the illness and death from HIV of one of his own family. Nearly 200 people attended, which for this time of fear and denial within this politically divided community was ranked an achievement.

Over time this work led to contact with statutory bodies who came to see LEAT as being able to access communities who did not always welcome outsiders.  In 1997, funding was obtained to set up and promote two new specific initiatives.  A part time worker was hired with financial support from Wandsworth Sutton and Merton to promote HIV health awareness days for women from African communities, held in local church settings, a number of which had already taken place under the aegis of LEAT.  This reflected the work of a number of African women volunteers and had included days at churches and at  Chigwell Convent, where facilities and food were provided by the Sisters of the Sacred Hearts of Jesus and Mary who worked in Zambia in the field of HIV and two of whose sisters had served as chaplains at Mildmay Hospital, a LEAF member.

At the same time, a forum for clergy whose parish/church communities contained significant numbers of African origin worshipers was set up.  The outreach was intended to include a number of main stream denominational clergy as well as more informally organised churches.  This recognised the contact already existing and how this issue attracted a degree of distrust from clergy about how sensitive issues would be handled. The aim of the forum was to support clergy in this dilemma and to encourage the spread within congregations of accurate HIV information and to attempt to lessen prejudice, stigma and fear within these communities.

Earlier, a particular set of circumstances, came together in the London Borough of Southwark, through the good local contacts of Canon Shaw.  The local HIV service users forum indicated to statutory service commissioners in a consultation that they preferred to receive practical home support from people in their local community rather than volunteers from outside, as this helped them to feel part of the community rather than isolated.  At about the same time, a group of volunteers from the Church of England parish of St John’s, Goose Green, led by the then Vicar, Reverend Barry Naylor, and parishioners Ken and Barbara Dellar had been visiting patients in the HIV ward at East Dulwich hospital which had recently closed.  The Director was aware through local contacts that in other churches parishioners had expressed interest in volunteering with the field of HIV.  After discussions with the local Ecumenical Borough  Deans’ Network leaders, it was agreed that the Director should prepare in conjunction with Southwark Social Services and others a proposal and funding bid which was granted in 1998 funded form LSL Health Commission for a part time worker to support this local volunteer scheme, a  version of which still runs today.  Its initial appeal to LEAT was that it supported the response of local people, without duplication. Its appeal to the funders was that it offered a good quality, financially good value care and was able to reach some people (especially within the African communities who were not known to local services as they accessed treatment elsewhere to avoid detection within their communities, but were known to their clergy and to LEAT contacts.

Although, today the outlook of living with HIV has improved considerably, our role continues to develop and grow to:

Highlight new areas if concern
Increase awareness and understanding
Root out and challenge prejudice
Generate and deploy new and more appropriate programmes and services
Encourage safer behaviours
Address the needs of those marginalised and stigmatised
Work in partnership with people affected by HIV and other key stakeholders to achieve our goals