1. It?s a network of mainly NGO s working in Soweto with people infected and affected by HIV/AIDS and other terminal illnesses.
2. We know of around 70 NGO s in Soweto that are all working with the above client group.

What are we aiming to do?

1. To improve the care of people infected and affected by HIV/AIDS and other terminal illnesses in Soweto.
2. We are doing this by acting a bridge between the statutory and non statutory sectors.

The above is a model of provision for the care of people who are terminally ill with advanced HIV/AIDS in Soweto. The model was developed by Wits Palliative Care and is called the N?doro model. The word N?doro is Shona and means healing. It?s a patient centred model. The model shows the patient having all of their needs being met by the different services that they require. In order to access these services they should know where the services are, what services are available and who can provide them. The dark pink line in the model brings all of the people providing services together. This line represents the Soweto Care Givers Network which is the interface between the statutory and NGO service providers. The network therefore brings all stakeholders together with the aim of improving the care of patients.

Why do we need Soweto Care Givers Network?

1. We are aware that there are poor linkages between organisations providing services to patients/clients in both the statutory and NGO sectors.
   
2. Many of the organisations providing services are involved in home based care. At a national level there is no clear home based care policy. This means that organisations on the ground have no clear guidelines about the service, frequency and standard of service they should be providing. There can therefore be a wide margin in terms of both the quality and frequency of care being provided. Every patient/client should know what services are available and should be able to expect those services to be of a comparable high quality.
   
3. The majority of the care of people infected and affected by HIV/AIDS and other terminal illnesses is being done by home based care givers working for community based organisations (CBO?s), Faith based organisations (FBO?s) and non governmental organisations (NGO?s). These organisations have to apply to the government every year to fund the work that they do. Part of that funding is to pay caregivers stipends. The amount isn?t specific and there are fluctuations in amount from organisation to organisation. Caregivers are not actually employed by the organisations that they work for and therefore have no employment rights despite the fact that most of them do a full-time job. There is no career path or progress route that a home based carer can presently easily follow. The training that they receive is currently for 69 days during which time they learn skills to be a home based carer ? to bed bath patients, dress wounds, to monitor TB dots etc. Many organisations in the network have told us that the government?s 69 day training course is often not available and that the content of the course doesn?t adequately equip people for the role of a home based carer. Caring for people who are terminally ill is not easy and caregivers have also told us that they go both unrecognised for the work that they do and without the support that they need. Some organisations make sure carers have debriefing sessions, but for many this never happens. There are therefore huge issues around the use of volunteers in the care of people who are terminally ill.
   
4. Many of the CBO?S, FBO?S and NGO?s involved in the care of terminally ill people lack the capacity through management and organisational skills to be able to sustain themselves over time. The network has undertaken a skills audit of a cross section of organisations in Soweto and have found that many organisations ? both funded and non funded lack fundamental skills in areas such as report writing, managing money, basic administration, running meetings etc. This has implications for the quality of service that they can provide and for their ability to safeguard their survival over time.

Needs of the community that the organisations Soweto Care Givers Network work with have made us aware of:

In addition to the organisational challenges that have been outlined above the organisations that the network works with have told us that caregivers are confronted by the following challenges in working with patients and their families:

1. There is a high level of poverty in many families in Soweto. In many households nobody in the family is employed nor receiving any other form of income.
2. Many anti retrovirals (ARV?s) need to be taken with food. People often don?t have access to food to enable them to successfully take and continue taking their ARV?s.
3. There are a growing number of orphans and vulnerable children.
4. Accessing social grants such the disability grant can be difficult. This can be due to the shortage of social workers in South Africa and the length of time it can take to process an application. The patient can often have passed away before the grant has been awarded. Even in situations where the grant is accessed the current policy of only awarding it to someone who has a CD4 count of 200 or below or who has an AIDS defining illness is fraught with problems. Once people start taking ARV?s their CD4 count usually rises. Because of poverty people are often opting not to take anti retrovirals as the grant often doesn?t just maintain them, but other members of their family. The current grant rules are therefore a disincentive for people to live.
5. There is still a huge level of stigma surrounding HIV/AIDS and for this reason people are not able to disclose their status for fear of reprisal. This often means that people who know their status are isolated. Stigma also discourages other people from testing.

Change?..through networking?..

The situation described above is complex and illustrates that people living with terminal illnesses such as HIV/AIDS, their families and the CBO?s, FBO?s and NGO?s that work with them are struggling to cope.

Individually the above organisations have told us that it is difficult to change the situation. Together however, through a network organisations can work together to find solutions and to advocate for change through ?one voice?. Soweto Care Givers Network is a membership organisation. We are building our membership and members are entitled to a package of services as members of the network. This includes advocacy on issues that aim to improve the care of people infected and affected by HIV/AIDS and other terminal illnesses.

How have we developed the network?

We?ve used a community development approach of working from grass roots up with the organisations and people in the community who are close to the ground and who know what is happening in Soweto.

A Voluntary Services Overseas volunteer has been working with both a steering committee of local people who are all representatives from different organisations and a mentee who is a local person who has been working with her on a daily basis.

What is the network doing?

. Networking tools such as:

1. Imbizos
2. A quarterly newsletter
3. A database
4. A website

have been used to bring organisations together and to encourage them to work together, improve linkages and to share ideas, information and existing resources.

The work of the network in 2005 and 2006

In 2005 we put in place a solid structure around which we can both work and grow. The steering committee developed a constitution, code of conduct, membership scheme and work plan for 2006. This was presented at the November 2005 imbizo where organisations were involved in giving feedback and shaping the current network structure.

In 2006 we have been developing tools for networking as described above and building relationships with all of our stakeholders to improve linkages between organisations. We have built relationships with the department of Health, Social Development, South African Social Security Agency, the Department of Home Affairs and the Department of Labour. We met with all of these organisations to start to look at ways that we could work together to form better linkages and to discuss how the statutory and NGO sectors could work in partnership. We held an imbizo in July 2006 where we brought both the statutory and NGO sectors together to look at ways that we could meet both of these objectives. We are currently working on taking the outcomes of this meeting forward.

As described previously we have undertaken a skills audit of a cross section of organisations in Soweto to find out about their organisational development and capacity building needs. We are also working on auditing training providers to find out about the training that is available and to assess whether it is meeting the needs of the organisations. We plan to hold a meeting in October 2006 where we will bring all of the stakeholders together and to action plan our capacity building work.

Progress plan for Soweto Care Givers Network

2005 ? We laid the foundations for our work involving the community stakeholders
2006 ? We have been developing tools for networking and building relationships to improve linkages. We have also audited a cross section of organisations and will plan our capacity building work involving all stakeholders.

2007 and beyond ? From 2007 onwards Soweto Care Givers Network will start undertaking advocacy work to advocate for change around some of the issues that have been described. This is a crucial role of the network.

The role of Soweto Care Givers Network in building civil society and advocating for change

Civil society in South Africa needs to be strengthened to effect change. We have developed a model of a district based network which operates within Soweto and surrounding areas. We believe that the network is both small enough to be close to the community, but large enough to be effective as an advocacy organisation in improving the care of people infected and affected by HIV/AIDS and other terminal illnesses. We have learnt lessons in developing our model which will be useful to others who want to set up a similar model. It is not possible to fully replicate any model in different communities as communities are unique. We may experience similar problems but our response to those problems will involve different people with different skills and ideas. What can be useful however is if principles of the lessons learnt are shared with others to guide them and to help them to learn from what others have already tried.

The future of the network

Soweto Care Givers Network has been growing under the umbrella of Wits Palliative Care which is currently based at Glynn Thomas House at Baragwanath Hospital in Soweto. We have set the network up using seed funding from Ireland Aid. We aim to be a fully independent organisation in the next year or so with our own independent funding and premises in Soweto.