Working with people with HIV and their carers since 1987

History

United Kingdom
Giving initially (1987 – 2000) was through the Robert Grace Trust Hardship Funds at London’s Middlesex Hospital, linked with the HIV/AIDS patient counselling service at Mortimer Market, and the Royal Free Hospital HIV/AIDS counselling services.

By the end of the 1990’s the Robert Grace Trust had helped around 800 people in the UK with immediate one-off grants with a value ranging from £100 to £250, given within days of their need being identified by the referring counsellors.

With the great advances in medical intervention in the northern hemisphere, including the UK, by the late ‘90s, demands on the Trust’s Hardship Funds reduced substantially and, in 1999, the Trustees decided to extend their giving to Sub-Saharan Africa.

By 2010 the RGT’s giving went full circle in the UK, when we renewed our connection with Mortimer Market, and their Patient Counselling service, reviving the Hardship Fund to provide small one-off discretionary grant support for clients of defined need. In 2012 this ongoing facility continues to be administered by Christopher Sandford, a Trustee of the RGT.

How the Robert Grace Trust began – 1987-2000
The UK - based Robert Grace Trust was set up in London in 1987 by friends of the South African architect Robert Grace, as a memorial to him following his death from AIDS after a 2 year illness.

The Trustees spent its first year setting up, researching areas of need and the services provided for people with HIV/AIDS at that time.  It may seem difficult to believe now, in the UK and 25 years later, with the availability of ARV’s and greater understanding of the illness, that the stigma and fear was so great at that time.  And certainly the fears were not without reason as so many friends seemed suddenly to be ill and then dying and then dead. And people didn’t know how to respond both to those who were suffering and to their families – many of whom were kept uninformed in order to protect jobs, relationships, families, everyday sanity.

With HIV/AIDS being such an unknown condition, support systems were simply not in place and any statutory support that did exist, in particular, was certainly not geared to respond to the rapidly changing needs of those living with HIV/AIDS.

By the last months of Robert’s illness, he was looked after at the Middlesex Hospital where he died on 31st January 1986. Cared for by the Mortimer Market Counselling service, as well as the medical staff at the Middlesex, Robert was clearly helped by the loving support of the counsellors allotted to his care.

At the time there were other people on the ward who, unlike Robert, had few or no friends or visitors and for them the counsellors were an even greater life-line.

So, after researching areas where an HIV/AIDS charity could be of use, the Trustees decided to provide support in the area that they had direct experience of – the work of the in- and out-patient counselling service at the Middlesex Hospital. 

The first Robert Grace Trust Hardship Fund was set up in 1987 to provide practical and immediate support, at the Middlesex Hospital, through the Mortimer Market Counselling service, to their clients via requests from the counsellors, themselves having established the areas of immediate need of their clients. Typical gifts were:

  • Respite care for weeks for client to help partner, washing machine, outstanding service bills, monthly rent bill, holiday, bedding.

The charity’s remit extended to the carers of the people with HIV/AIDS.  Thus we gave to the ward and to the nurses and to carers, bereaved partners and families. Typical gifts were:

  • a Christmas party on the ward, specialist training courses for the nursing staff, the transport on behalf of a partner of his partner’s body for burial in Italy, funeral bills.

A second and similar Hardship Fund at the Royal Free Hospital ran from 1995 to 2000, after which its funding was replaced by the Hospital’s own system.

Links between the Trust’s work in South Africa and that in the UK  acquired further synergy when, in 2002, the Chelsea and Westminster Hospital named their special HIV / AIDS unit, the Nkosi Johnson Unit, after the amazing boy whose inspiring short life gave the name to Nkosi’s Haven in Johannesburg.  Gail Johnson, his adopted mother, attended the opening of the unit along with the Patricia Pearson from the RGT.

The Middlesex Hospital Fund was never closed but demands on it substantially reduced by the turn of the century, as treatment changed and the needs of clients became more long-term than immediate and by the early 2000’s requests for grants had more or less ceased. So the revival of the Hardship Fund in 2012 has been greatly welcomed by the Trust.

Background history – 1999 to 2013
In 1999 the Trust’s giving moved focus to Sub-Saharan Africa where the acuteness of the pandemic was at its most critical, clearly exacerbated by the lack of official recognition of the problem and virtually no strategies for supporting the increasing numbers of families experiencing HIV/AIDS first hand in their lives usually with fatal consequences.

Coinciding with the reduced demand on the Trust’s proven giving strategy in the UK, contact was sought with similar organisations with greater immediate need. After some research, including a number of visits and interviews seeking like-minded people that we could work with and trust, as we did the counsellors handling RGT one – off grants to their clients in the UK, the Robert Grace Trust set up Hardship Fund-type arrangements with Gail Johnson of Nkosi’s Haven and Professor Selma Browde of the Palliative Medicine Institute, now renamed Community Action – both in Johannesburg, South Africa.

A key feature of these new relationships, all of which exist to this day, was the feeling of trust between key individuals, based mainly on the sharing of the aims of the Robert Grace Trust – to help those in need and their carers – that characterise these three organisations.  The first, Nkosi’s Haven, moved out from a very specific starting point – the life of an exceptional child, Nkosi Johnson an AIDS orphan who lived an amazing life and died of AIDS at the age of 12– and the second, the Palliative Medicine Institute, later Community Action, considered how to implement a strategy for HIV/AIDS treatment and prevention throughout the nation, via a set of specific pilot programmes of palliative care and education in hospitals and the community. 

In both cases the courageous and single-minded founders of these 2 organisations were already ground breakers in their respective fields, with proven track records of effectiveness in the struggle with HIV/AIDS when we made contact with them and they continue to be so to this day, dealing daily with challenges and hurdles that we in the UK are fortunate enough almost never to have to experience.

Later, in 2003, through the local chief of Ongata Rongai and Val Leakey in Kenya, the Robert Grace Trust found in Margaret Wanjiru, James Mbugua and the staff at St Pauls Children’s Home, the same dedication and clarity about what they wanted to achieve for the children in their care and those they sought to help.

Current position in 2013
The Robert Grace Trust initiatives and support in South Africa and Kenya currently include:

  • Nkosi's Haven, Johannesburg – a NGO founded by Gail Johnson
    www.nkosishaven.org 
    Nkosi’s Haven started as 1 and then 2 houses in a Johannesburg suburb providing a home and life for  50 AIDS orphaned children, including siblings, and some mothers with children as well. It now includes the Nkosi’s Haven Village with around a further 100 adults and children.  
    In addition to raising funds to support the Nkosi’s Havens, the Nkosi Vukani outreach programme in Johannesburg and Soweto helps destitute children and families, affected by HIV/AIDS, through the charitable work of the Soweto Gospel Choir, including a massive fundraising collection at their performances overseas.

    RGT giving and support has run from 2000 to the present day

  • Community Action, originally The Palliative Medicine Institute, Johannesburg
    The Palliative Medicine Institute, now Community Action, was founded by Professor Selma Browde and a palliative care team, including Nonhlanhla Dube, initially specialising in the care and counselling of people with HIV/AIDS and their families and carers, through the Johannesburg General Hospital counsellors and home-based care workers in the communities of Soweto and Alexandra. She went on to launch Community Action’s programme of innovative and cutting edge strategy in the fight against AIDS, which has been widely recognised, both in South Africa and beyond.

Selma’s aim has always been to contribute to the establishing of a nationwide public health programme to deal with the HIV/AIDS pandemic through education, training and community-based care support. To this end she has sought tirelessly to set up partnerships in the public and private sector, to combine her teams’ universally recognised  and respected knowledge and experience with selected partners’ greater resources so as to extend the tried and tested Community Action strategy across the country.

RGT support currently is focused on providing stipends for the 5 care workers in Alexandra working on the Community Action pilot project in Alexandra, also giving Hardship Fund support for their clients on request. 

RGT support and giving has run from 2000 to the present day. 

  • St Paul’s Children’s Centre
    Based in Ongata Rongai, on the outskirts of Nairobi, the orphanage, set up with the help of significant local people, is run by Margaret Wanjiru. James Mbugua and later Joy Mbote, have a broader remit to provide art and craft training for the residents and some local youth groups, funded by the Trust.  The orphanage provides a home for 50 orphans up to the age of 18.  There is an adjacent smallholding which is farmed to provide the Centre with vegetables and poultry and eggs.

From 2004 the Robert Grace Trust began to support St Pauls with small grants and, since 2008, through the wonderful ongoing generosity of one individual donor, we have been able to provide a regular monthly contribution to the running of the orphanage.

RGT support and giving has run from 2004 to the present day

  • ‘Spotted Orchid’ Art Workshops
    On a number of occasions since 2001, Rupert Record, a Robert Grace Trust Trustee, has visited South Africa and Kenya, with various colleagues at different times, to set up and run awareness-raising ‘Spotted Orchid’ Art Workshop programmes with a range of HIV/AIDS organisations for children, including all of those regularly supported by the Robert Grace Trust.

    These have always been a success, not only for the pleasure and interest of the children themselves but also in giving others an insight into and a link with life both on the other side of the world and across the health divide.  In the case of the workshops in Kenya, the craft works have been bought and then sold in the UK by the Robert Grace Trust and thus become a means to help them continue to help themselves.

    RGT support and giving to Art Workshops has run from 2000 to the present day