HIV Australia | Vol. 12 No. 1 | March 2014
By Liz Crock and John Hall
Liz Crock and John Hall look back on a 30 year partnership providing advocacy and support to people with HIV in Victoria.
The Victorian AIDS Council/Gay Men’s Health Centre (VAC/GMHC) and the Royal District Nursing Service (RDNS) have had a formal partnership in place for the past 23 years, and more importantly, have worked together to support people with HIV for 30 years.This partnership between these two Melbourne-based organisations remains a world first model of integrated community-based care and support, advocacy and health promotion for people with HIV, their significant others and volunteers, and is an easily accessible point of expert contact for sector staff.RDNS is a community nursing organisation established in 1885, to treat ‘the sick poor’ in their own homes.1
Victorian AIDS Council/Gay Men’s Health Centre (VAC/GMHC) is a strong, diverse community-based organisation, which formed in 1983, born out of the gay community’s social and political activism in response to the imminent threat of what was then called GRID (Gay Related Immune Deficiency).Although RDNS and VAC/GMHC may seem to be ‘unlikely bedfellows’, the fundamentals underpinning both organisations’ philosophies and practices were aligned: an expressed commitment to client empowerment, a focus on social justice, access and equity in regard to healthcare, information and education and a commitment to human rights. These shared values and principles ensured that an effective and enduring relationship could be nurtured and would endure the test of time.
Coming together: a marriage of convenience
The first RDNS HIV patient was cared for in 1985 by a nurse who had taken a personal interest in HIV/AIDS and undertaken self-education, thus it was not initially an organisational response. Since 1986, RDNS has had a specially funded HIV Program.RDNS Director of Nursing, Norma Bryan, took the lead, ensuring that education was available for the nurses and their families to allay fear and promote a professional approach to this devastating epidemic.
Three specialist nurses initially cared for all HIV and AIDS patients in their region. These nurses already had regular contact with VAC/GMHC’s Support Program workers and volunteers, before the formal partnership was established. As numbers grew, in 1988 the ‘AIDS Nursing Program’ was integrated into the mainstream nursing service at RDNS.During the early years of the epidemic, RDNS was integral in training VAC/GMHC volunteers in home-based care, infection control and supporting people to die at home. This occurred during a time when public ignorance – and sometimes political hostility – was rife, so the stage was set to forge new relationships within the sexual politics context.
In 1987, the Victorian Department of Health had recommended integration of RDNS’ HIV Program and VAC/GMHC. The structures of VAC/GMHC, covering three main regions, (North/West, Eastern and Southern) with links to regional HIV support groups, were aligned with RDNS’ regions. Over time, these links opened the door for shared clients to engage in broader health and wellbeing options at VAC/GMHC, including counselling, GP services (HIV, sexual health and lesbian, gay, bisexual, transgender and intersex [LGBTI] health), peer education, peer support, health promotion initiatives, financial and legal services, as well as referral to partner agencies.
Our family of partner agencies expanded beyond clinical and community connections to the Prostitutes’ Collective (now RhED), Vivaids (now Harm Reduction Victoria), GAMMA (Gay and Married Men’s Association) and transgender groups, to name a few. These groups soon became active in VAC/GMHC’s training and education schedules due to the perceived ‘at risk’ status of people they represented. Once you hopped into the collective services bed with VAC/GMHC, one could find themselves in a world of intriguing companions.The path to unlikely, but perfectly matched bedfellows was well and truly established.
Formalising the engagement
Following the recommended ‘marriage of convenience’ initiated by the Department of Health, a position paper Home care for people with AIDS in Victoria2 led to a pilot project being undertaken in 1988.
Key elements of an integrated service model were identified in the project, many of which are still central to the partnership today. These included: making appropriate use of existing resources through integration of flexible and trained volunteer labour; professional and accessible nursing care; catering for people at diverse stages of HIV infection; providing the best quality care and expertise; service user input and participation in service development; developing a continuum of care; integrating the two services; and regionalising VAC/GMHC support services.3
The project consummated the relationship between RDNS and VAC/GMHC and a broad community-based health and wellbeing service was born. In a radical move showing VAC/GMHC and RDNS to be ahead of the ball game, the client empowerment and engagement model pioneered in the project is referred to today as the ‘GIPA’ principle. The partnership was six years ahead of the declaration of this principle at the 1994 United Nations Paris AIDS summit.
Relationship dynamics and evolving roles
From the mid ‘80s to the early ‘90s, the focus of the VAC/GMHC/RDNS relationship was on providing care around the clock for people who wanted to die at home, or who needed ongoing technical treatments. Many had few family supports and volunteers often took the place of families. VAC/GMHC volunteers were seen as valued and equal partners, often being the ‘eyes and ears’ for nursing staff, including recording – with the client’s consent – observations in RDNS’ communication books.
As new treatments became available in the mid-1990s, many more people with HIV survived, yet the need for community-based services has grown. The RDNS HIV Program and VAC/GMHC HIV Services have adapted to meet changing demographics and diverse needs.
In some ways the issues today faced by people with HIV are more complex. Notable changes in the last ten years have included: a greater proportion of women, people from culturally and linguistically diverse backgrounds including refugees and asylum seekers, a range of comorbidities, mental health, alcohol and drug issues, physical frailty and ageing, cognitive impairment and disability.
These changes influence both the planning and nature of care. Homelessness and issues relating to poverty are increasingly prevalent amongst people with HIV supported by the partnership.The skills, knowledge of resources and community linkages required to provide care to such diverse groups pose additional challenges to mainstream services. The relationship between VAC/GMHC and RDNS provides an effective ‘early detection’ mechanism and pathway to deal with emerging issues such as these.
Current partnering: the relationship blooms
In 2006, VAC and RDNS entered into a formal Partnership Agreement, which continues to the present day. This agreement incorporates areas of integration and collaboration including education (for clients, volunteers, RDNS and VAC/GMHC staff), strategic planning, joint staff selection committees and health promotion projects. Strong mutual referral pathways exist between the two organisations, including with VAC’s clinical services (The Centre Clinic), counselling, and the new rapid testing service, ‘Pronto!’
Today the HIV Program at RDNS consists of three regional-based HIV Clinical Nurse Consultants working across metropolitan Melbourne and the Mornington Peninsula. In recent years additional roles were developed. ‘HIV Resource Nurses’ are based at RDNS centres in the south, north and west of Melbourne where large numbers of people with HIV reside.4
In 2010, the (state funded) Hospital Admissions Risk Program piloted additional HIV nursing roles based in hospital settings which enhances communication and referrals, and prevents people with HIV falling through the gaps. One of these new HIV nurses is employed through RDNS, thereby building capacity.
VAC/GMHC has been restructured with a Services Division combining operations at the Positive Living Centre, volunteer activities through Community Support, In Home Support (residential, paid attendant care for clients experiencing complex psycho/social/health issues), Positive Counselling for people living with and those affected by HIV, LGBTI issues, hepatitis C, and other issues, the Centre Clinic and ‘Pronto!’RDNS plays an active role in volunteer and staff orientation and induction processes and is a clinical resource for these groups.
RDNS also advises on changes within the epidemic and emerging issues. An example is the current input into service planning around ageing with HIV being undertaken by Burnet Institute and the Alfred Hospital in partnership with other community groups. RDNS also serves on VAC/CMHC’s Research, Ethics and Promotion Committee.
Parallel epidemics – divergent outcomes
While most people are living well with HIV, clearly there are subgroups that are not. This is a fact that is understated and undervalued at many levels, seemingly incongruent to current approaches to health care planning, priorities and funding.
At the height of the epidemic, (pre-HAART) there were several deaths a week. This has decreased dramatically, however we still average one death per month amongst RDNS and VAC/GMHC clients from HIV–related disease complications (PML5, cardiovascular disease, various cancers, liver failure) and even suicide. With the demise of specialist HIV/AIDS bodies in some states and the mainstreaming of care and support in others, it is vital that advocacy for those most at risk of poor outcomes is not lost.Our Partnership provides the capacity to monitor the situation and advocate on the realities of what the ‘chronic’ status of HIV really means – often to the discomfort of some within clinical services and peer–based bodies. Depending upon when and where one was diagnosed, what drug regimen one may have experienced and what comorbidities one may have, there can be very different health outcomes.
The Partnership provides a safety net for people with HIV with complex health and psychosocial issues which other services may overlook or with whom they may be reluctant to engage. Sometimes, sub-groups are marginalised even within the HIV sector: these are all priority groups of the national and Victorian HIV strategies. Both RDNS and VAC/GMHC proactively enact the philosophies and goals of the strategies. Fundamentally, it’s about social justice, human rights, and equity in health care, all essential for good health outcomes.
Healthy offspring: health promotion and prevention
Another element of the Partnership that has developed in recent years involves joint projects. In 2010, the HIV team at RDNS observed a growing number of clients with poor food security, low literacy and limited cooking and shopping skills. VAC/GMHC raised funds and ‘Tuckerbag Meals’ was piloted as a community development and health promotion project, with volunteers providing simple menus, delivering ingredients and materials, and mentoring in cooking skills over a three-month period.
Evaluation by three Monash University medical students on a community placement with the RDNS HIV Team showed greater participation by people with HIV in cooking and engagement with family members, improved skills and confidence in cooking, shopping, and self-esteem.
Since 2011, VAC/GMHC has raised funds from other sources (GLOBE, The Laird Hotel, Ian Potter Foundation, and the National Australia Bank) to sustain ‘Tuckerbag’. The program has expanded to include clients from the Horn of Africa, Vietnam and the Middle East, often with children with diverse nutritional needs and preferences.
The future of the relationship
The VAC/GMHC/RDNS Partnership plays a pivotal role in linkage, engagement and retention of people with HIV in health care.
The role of RDNS in promoting HIV treatment adherence ranges from providing education, reinforcing safe behaviours and coordinating overall care in the community within the Partnership, ensuring treatment access. Volunteers from VAC/GMHC provide transport to medical appointments, socialisation and practical and emotional supports, all central to adherence and the reduction of risk behaviours. These comprehensive and responsive services will serve to empower clients and will contribute to preventing HIV transmission well into the future, and ensure that ‘treatment as prevention’ can reach those most vulnerable, in the spirit of true equity.
Promoting and assisting in Advance Care planning, including providing ongoing support to those who competently decide not to take treatments, a challenging and controversial topic nowadays, are also important roles of the Partnership.
The enduring marriage continues
Fundamental to the success of the RDNS/VAC/GMHC Partnership Agreement has been the ‘marriage’ of good community-based services, with clinical and non-clinical staff, including volunteers, working together to optimise health and wellbeing for people with HIV.
Although at first glance, a Partnership between a traditional nursing service and a radical, grassroots gay activist organisation at the height of the HIV epidemic may seem counter-intuitive and improbable, the model of care and service delivery developed between RDNS and VAC/GMHC has certainly stood the test of time. Unlike other passionate affairs, it is not fizzling out but is growing stronger, more resilient and responsive to changing needs and dynamics as the HIV sector faces the challenges of the next decade.
References
1 Rosenthal, N. (1974). People not cases: the Royal District Nursing Service. Thomas Nelson, Melbourne.
2 Health Department Victoria AIDS/STD Unit. (1987). Home care for people with AIDS in Victoria. Health Department Victoria, Melbourne.
3 Jackson, A., O’Donnell, M. (1990, 11–14 September). A Model of Partnership: Demonstration project of an integrated regional home care program for people with AIDS. Paper presented at Australian Council of Community Nursing Services 6th National Congress: Humanising Health Care: Enhancing Partnerships, Perth.
4 Crock, E., Butwilowsky, J. (2006). The HIV Resource Nurse at the Royal District Nursing Service (Melbourne): making a difference for people living with HIV/AIDS in the community. Australian Journal of Primary Health, 12(2), 83–89.
5 Progressive multifocal leukoencephalopathy (PML) is a disease of the central nervous system that affects around 5% of people diagnosed with AIDS. Prior to the advent of HAART, the average life expectancy for most people diagnosed with PML was two to four months. Post-HAART, the disease still has a significant mortality rate.
A study conducted by Berenguer et al. in 2003 found that around one-third of patients receiving HAART died within two years of receiving a PML diagnosis. www.aidsmap.com. Retrieved from: www.aidsmap.com