The following organisations feature prominently in South Africa:

The Hospice and Palliative Care Association of South Africa (HPCA)

In his chapter Hospice in Southern Africa, Peter Bucklandnotes that the Hospice Association of Southern Africa was formed in 1987 ‘to represent, facilitate and co-ordinate development and growth of hospice in the region’.³⁶ He was instrumental in shaping the association during its formative years, having left his post as executive officer of St Luke’s Hospice ( Cape Town) to help take the Association forward.

By 2002, the association was made up of around 50 member hospices, although large areas of the country were without a palliative care service.³⁷ Today, the Association has changed its name and geared up for the challenges brought about by the AIDS pandemic and the urgent need for expansion. ³⁸ , ³⁶ The director’s report of 2004 outlines the structure of HPCA:

A voluntary board of ten directors, elected by hospices directs the Association. In addition, three directors may be co-opted by the board of directors. A consultant supported by a small office staff manages the day to day affairs of the Association. In response to needs expressed by the membership, the board formed five committees to facilitate development of the hospice movement in South Africa. These five committees are: Advocacy; Fundraising and Public Relations; Organisation Development; Education and Research; and Patient Care Services.⁴⁰

Josef Lazarus, strategic adviser to the board of HPCA identifies the significance of these committees in the development of the Association:

I think circumstances often provide a new direction for an organisation. In 1997 the then executive director of the national association resigned and I was then asked to do a strategic planning exercise for the national organisation, in terms of its future direction. And through that we put a plan in place that actually made the national organisation much more development orientated. It decentralised the national organisation. As opposed to having a central organisation, the national office became a facilitator of hospice development as opposed to a national office that simply represents hospices. Instead of having a CEO who couldn’t possibly fulfil all the functions as required in development, because they’re so varied, we identified five key portfolios that are required for hospice development; they being patient care, education and training, organisational development, advocacy and public relations and fundraising.

That has pretty much revolutionised the Hospice Association in South Africa. The people that you’ve seen here like Liz Gwyther and André Wagner and Joan Marston, they are conveners of those development sub-committees and they’ve taken full ownership and responsibility for their portfolio with the expertise of their sub-committee. It’s become an entirely decentralised organisation with only one full time staff member, and that’s an administrator. The organisation is driven by a team of people with expertise in a particular portfolio. There is a fund to support their activities and hospices are encouraged to engage in further development, extending their services, because there is a fund that supports that development activity specifically.

The Hospice Association was asked to do three major tenders for the national department of health - done by these development sub-committees. These development sub-committees now sit on a newly formed steering committee of the department of health for palliative care in South Africa and that steering committee is now forming similar sub-committees for operationalising palliative care though-out South Africa - so that model is now beginning to be replicated by the national department of health. It’s been a very exciting journey the last five years.⁴¹

Reports presented by committee leaders at the HPCA AGM in Rustenburg (2004) included the following points:

Advocacy

• Desk review of palliative care training and services carried out (October 2003); a database developed for the national department of health
• Department of health plan to integrate palliative care into curriculum of care
• Publication of Adult Palliative Care Guidelines. Concept papers written: Palliative care in South Africa and Care of children made vulnerable and orphaned by HIV/Aids within hospice palliative care programmes
• Extensive international advocacy activities in Europe, UK, USA⁴²

Advocacy officer Joan Marston comments:

It’s not enough just to persuade the politicians and the government departments; we’re looking at really educating the public. Thanks to the Diana Princess of Wales Memorial Fund which, to me, has been the most pro-active funder in Africa - they’re a very wise, very insightful funder and they don’t put in huge sums of money but they put it in very strategically, and they’re funding the advocacy programme. We’re also developing a media campaign and we’re busy getting extra funding resources for that because that’s a horribly expensive campaign to do. So we’ve got a number of leading figures who are going to take part in the radio ads, eventually, and TV ads. We’ve got some print ads developed as well; and yeah we’re going forward with that as well, because you really need to get the public onboard for many reasons - so that they ask for palliative care, they understand they have the right to palliative care and they volunteer to help with palliative care as well.⁴³

Fundraising and Public Relations (one report, 2004)

• The major function of the fund-raising committee will be:

~to build the capacity of member hospices to do effective fund-raising ~to develop standards for the accreditation of fundraising and public relations at member hospices

• Each provincial hospice association will identify a person to help build the fundraising capacity of member hospices within the region
• A draft Fundraising and Guidelines Policy has been produced. The development of fundraising and PR standards is in process.⁴⁴

Patient care services and education (one report, 2004)

• Consolidation of the post-graduate palliative medicine course
• Inclusion of 28 hospices in HPCA mentor program; securing funding for second year
• Partnership of HPCA with COHSASA (Council for Health and Services and Accreditation for South Africa)
• Successful grant applications, including: Elton John AIDS Foundation; Canadian International Development Agency; PEPFAR
• Contribution to development of African Palliative Care Association and Arusha conference⁴⁵

Kathleen (Kath) Defilippi gives details of the mentorship programme and the model of integrated community home based care endorsed by HPCA.

I would like to elaborate on the whole concept of mentorship in terms of hospice and palliative care in South Africa and indeed the entire African context. We’ve embarked on a mentorship programme here in South Africa. We managed to get funding from the Open Society Institute in 2002, and we’re now in the second phase of funding and the second phase of mentorship. We used really well-established, developed hospices to provide guidance and support to emerging or less-developed hospices, within their geographic area; and the reason that we did it was because we felt, in view of the HIV/AIDS epidemic and the enormity of the need for palliative care, that it was really necessary for all the hospices belonging to the Hospice Palliative Care Association of South Africa to really be able to function as a resource that reached out and empowered other organisations, like faith-based and community organisations, to give good home-based care; and I agreed totally with Anne [Merriman] that unless home-based care includes both holistic care and proper pain and symptom control, you can’t call it palliative care. And we believe that our mission is to promote palliative care - so to graft on symptom, pain and symptom control where that’s missing, and to graft on holistic care in hospitals with palliative care teams where that is missing; and in each of those instances to do it in a very supportive, facilitatory fashion. So that’s really the focus of our mentorship programme.

The initial programme was that successful that we applied and received funding for a second phase. Now in the second phase we’re moving from just using individual hospices to provincial or regional hospice associations, and it’s also been really providential that it’s coincided with the funding from PEPFAR, which means that we’ve now been able to have provincial palliative care development teams which include a variety of skills and, as well as a full-time employed person paid by the PEPFAR funding. And then having the clinical disciplines represented so that there is physical, emotional, social and spiritual care abilities and experience represented, as well as management, human resources, and even fundraising, and - very importantly - training and education. So we’ve got a team of about 9 to10 people now in each of the areas in South Africa where we have a provincial or regional hospice association. There are nine provinces in South Africa. We don’t yet have enough hospice services in all of the provinces to warrant a provincial association, but that’s our aim, and we certainly hope that within the very near future we will have nine provincial associations and nine provincial palliative care development teams. ⁴⁶

Africa Palliative Care Association (APCA)

This international association was formed after a meeting of hospice and palliative care trainers in Cape Town that led to the Cape Town Declaration.⁴⁷ The first APCA steering committee meeting was held in Uganda from 19-20 February 2003. Steering committee members were drawn from: Kenya (Zipporah-Merdin Ali), South Africa ( Kath Defilippi), Tanzania (Mark Jacobson) Uganda ( Anne Merriman) and Zimbabwe (Sambulo Mkwananzi).⁴⁸ In summary, APCA aims to:

• promote study, knowledge, training and research in palliative care
• foster networks and links at all levels of palliative care
• address ethical issues
• establish an international communication network
• sponsor publications
• disseminate achievements
• promote access to resources

Objectives include:

• promotion of standards
• advocating for palliative care at governmental level
• securing the availability of drugs
• encouraging the development of national associations within Africa
• promotion of training programmes
• devising standard guidelines
• advocacy

Faith Mwangi-Powell, executive director of APCA:

I think there is hunger for APCA and I think there is so much commitment, and we’ve got such a fantastic board. We just hope that it will go from strength to strength, you know. I can’t say how grateful we are to PEPFAR, who have given us our first grant to establish ourselves. I think that grant is crucial: it’s not a huge grant but it will help us set up and be a viable organisation and have the structures and policies in place so that we can actually operate at a technical level. ⁴⁹

In many respects, the establishment of APCA builds on the broadening, formative role being undertaken by palliative care activists in South Africa and the growing recognition of this work among the palliative care community in Africa and beyond.⁵⁰

President’s Emergency Plan for AIDS Relief (PEPFAR) ⁵¹

During his State of the Union address in 2003, President Bush announced his PEPFAR initiative; this groundbreaking intervention encompasses HIV/AIDS activities in more than 75 countries and focuses on 15 countries worldwide – of which South Africa is one of 12 in Africa – to develop integrated care and treatment programmes (Table 9). Over the next 5 years, PEPFAR is donating a total of US $15billion, of which 15% is earmarked funding for palliative care. This has dramatically changed the palliative care landscape in Africa, as bids for new initiatives are attracting the funding for implementation. Four main areas are targeted:

• prevention of HIV transmission
• treatment of AIDS and associated conditions
• palliative care for HIV infected individuals
• care for AIDS orphans and other vulnerable children

Table 9 Countries of Africa involved in PEPFAR, Diana Fund and WHO projects

In May 2004, HPCA and USAID announced jointly that the President’s Emergency Plan for AIDS Relief had granted funding of $5 million (approximately 35 million South African rand) to HPCA over the next two years.

Dr. Dirk Dijkerman, USAID South Africa Director, said HPCA’s request for funding was successful for many reasons: ‘ Hospice has been working in South Africa for years, reaching millions of people who are suffering from terminal diseases such as AIDS … HPCA’s track record and network of organizations throughout South Africa demonstrate its competence and compassion,’ said Dijkerman.  He indicated that the project’s capacity to sustain its activities was well in place through HPCA’s ability to leverage complementary funding from local communities, trusts and foundations, combined with strong government partnerships locally, provincially and nationally.

In the press release, Joan Marston explained the ways in which the funding would be used:

• HPCA coordinates the activities of 52 hospices across South Africa which engaged the services of 6,355 people in 2002 and this funding will go a long way in strengthening existing and developing new hospice and palliative care service
• Hospices will benefit from the new structures, but won’t receive direct funding. Day-to-day expenses still need to be covered by the ongoing generosity of the public and corporate donors
• One of HPCA’s major obstacles lies in the unlocking of available hours of its staff and volunteer base. We have the expertise available, but we need to free up some time. The appointment of provincial palliative care coordinators, trainers and mentors, which will be funded by PEPFAR, will do exactly that. They will oversee the development of hospice and palliative care in their areas and will work with mentorship teams to help hospices and other NGOs, community-based organizations and faith-based organizations to establish new palliative care services.”                       
• Mentor hospices which will tutor and guide developing hospices will be identified and exemplar hospices will serve as centres of excellence with outstanding programs, such as bereavement care and home-based care. All hospices will be audited to ensure the care they provide is of the highest quality.⁵²

One of the new provincial co-ordinators, Brenda Dass, a nurse and former development manager (outreach programme) at Hospice East Rand, describes her role:

I’m now employed as the provincial co-ordinator, which is basically [concerned with] the mentoring programme. It really works in three ways: there is the mentoring of established hospices; the mentoring of emerging hospices; and the setting up of totally new programmes, and that is how we see our role. Then there’s liaison with the different departments involved in HIV/AIDS, the department of health, social services and education, as far as the children are concerned. And basically, what we’ve been doing up to now [August 2004], is identifying the development sites and doing strategic planning around those sites to identify the areas of need. We then set up a team - and the team comprises of people with various skills - so we can now send people in to do the development wherever the skill is needed.⁵³

André Wagner, HPCA board member responsible for organisation development speaks of another objective which, if achieved, will impact significantly upon hospice development in South Africa:

One of the objectives of the PEPFAR project is to have, towards the end of the five year period, one hospice in every health district in South Africa - health districts that are identified by the department of health. If we look at the department of health’s breakdown, there are more than a hundred and seventy health districts in the country and the idea is for us to have a hospice in each of those health districts; and that’s why the focus of this project is to develop, to strengthen, existing hospices so that they can be mentors and develop new hospices. The idea is to make sure that all hospices deliver the same level of care - that hospices be accredited - and that’s where our standards of care for clinical and management and governance come in.⁵⁴

Alongside this PEPFAR initiative, A Clinical Guide to Supportive and Palliative Care for HIV/AIDS⁵⁵- a book that had been published and freely distributed in the US - became the focus of a working party to adapt it for use in Africa. The working party, led by Liz Gwyther, took the project forward at a 4-day meeting in Cape Town (2003) sponsored by the US State Department and the National Association and Palliative Care Organisation (the umbrella organisation for hospice and palliative care services in the US). The African edition of the book is due to be sent to the printers in June 2005.⁵⁶

Open Society Institute (OSI)

The Open Society Institute has launched a palliative care initiative in South Africa that is intended to:

• advance programmes in palliative care education, training and service delivery
• advocate for their integration into national HIV/AIDS ‘treatment and care’ programmes

Information about the project states:

It is well accepted that nothing will have a greater impact on the quality of life of HIV/AIDS patients and families than institutionalising the knowledge we have now to provide pain management, symptom control and psycho-social support in an integrated community based programme for patients and families dying with HIV/AIDS. Integrated community based programmes for the care of patients and families with HIV/AIDS provide a range of services from HIV testing, counselling and prevention, palliative care, social support (food, clothing, housing) orphan care, day care centres, and income generating initiatives.⁵⁷

Reflecting OSI’s role as a catalyst, funding has been awarded to three NGOs that have been identified by OSI as leaders in addressing the care of patients and families with HIV/AIDS at the community level. These are:

• Medical Education for South Africa Blacks (MESAB)
• Hospice Palliative Care Association of South Africa (HPCA)
• Foundation for Hospices in Sub-Saharan Africa (FHSSA)

The initiative began in 2002 with OSI funding of US $300,000 to support the work of these organisations. Matched funding from Pfizer USA meant that around $540,000 was distributed during this year. Liz Gwyther recalls the impact of this funding:

OSI helped us in that, when our home-care programme for AIDS patients was started at South Coast Hospice and we received funding from our department of health to replicate that in seven different hospices throughout the country, we asked OSI for funding - to assist those seven hospices that we appointed as mentor hospices to assist another 22 hospices to come to that same standard. Not all of them are there yet but that will be part of this next stage. Stage two is where we have set up provincial development teams because what we found with the initial mentorship is that one or two people within the province were doing all of the mentorship and they found themselves very stretched, and their hospices lost them for a period of time while they were mentoring other organisations. So now we have five strong provincial teams that have a minimum of eight people on the team, with the total interdisciplinary representation including training, advocacy, person living with AIDS, the clinical aspects, the counselling aspects, and any other expertise that they feel they need.⁵⁸

The Diana, Princess of Wales Memorial Fund (The Diana Fund)⁵⁹

The Diana Fund has formed the view that palliative care plays a vital role in the management of life-limiting illness. In particular, palliative care is ideally suited to home based care; it makes use of affordable drugs and it empowers the family to care for their members more effectively.

In 2001, the Diana Fund launched a palliative care initiative which focussed on nine countries in sub-Saharan Africa ( Ethiopia, Kenya, Malawi, Rwanda, South Africa, Tanzania, Uganda, Zambia and Zimbabwe) and committed an initial £5 million over 5 years. The Fund does not implement palliative care programmes; rather, it supports locally-based partners who are already implementing programmes or who wish to incorporate palliative care into existing home based care services.

Among the grants awarded by the Diana Fund to help develop palliative care in South Africa are the following:

2001

• HPCA – 18 month project to establish and run an distance learning diploma in palliative medicine at the University of Cape Town (UCT), including bursaries for selected candidates: £35,000
• South Coast Hospice - for running an expanded home based palliative care programme including memory boxes for children: £80,000
• St Francis Hospice – contribution to strengthen home based palliative care programme including training care workers and employing a supervisor: £15,000
• St Bernard’s Hospice – contribution to strengthen and extend pilot home based palliative care programmes: £15,000
• Helderberg Hospice – to expand home based palliative care programme into two further (rural) communities, including training and capacity building: £15,000
• Grahamstown Hospice – contribution to home based palliative care programmes: 15,000
• Howick hospice (via Help the Hospices) – contribution to the costs of a home care programme in rural areas: £15,000
• Naledi Hospice – contribution to costs of expanding home based care programmes with a special focus on paediatric care, including related training for volunteers, families and professionals: £15,000
• St Luke’s Hospice – cost of employing a second doctor at Khayelitsha day hospice: £9,000

2002

• HPCA - 3 year advocacy programme for palliative care, including salary costs of a senior advocacy officer and costs of producing advocacy materials: £129,000
• HPCA – workshop costs for South African conference/ trainers meeting: £1224.80 (US $ 2,000)
• St Francis Hospice Association - training provided by Dr Lydia Mpanga Sebuyira of Hospice Uganda: £5,600
• Bursary to allow 2 black Africans to attend a conference in 2003 in The Hague to share experiences on setting up national associations for palliative care (via Help the Hospices): £5,000

2003

• HPCA – Commission to develop a curriculum for paediatric palliative care in South Africa: £24,135

UK Forum for Hospice and Palliative Care Worldwide⁶⁰

This NGO, formed in 2001 to support the development of palliative care in resource poor countries, falls under the umbrella of Help the Hospices (UK). Since inception, support has been offered to South Africa via the following funds and initiatives:

• Nomination of St Luke’s Hospice for IAHPC award, 2003
• Joint development of HASA (now HPCA)/ St Luke’s education centre proposal
• Partnership on children’s event March 2004
•  Howick Hospice – short course, HIV/AIDS care and counselling: £337
•   Zululand Hospice Association – palliative care course: £644
• Hospice North West - t o establish community houses for patients in the last stages of life. The costs include purchase of premises, installation of utilities, equipment for the kitchen, bedrooms and bathroom, and running costs including salaries, administration, food and medicine: £1000
• Onthatile – for the provision of holistic home based care to the patient with AIDS and the family in the Ga-Rankuwa area. This will be achieved by establishing two teams, each consisting of one registered nurse and ten caregivers: £2,000
• Refilwe community project - to employ a home based caregiver to work in the small settlements surrounding the hospice. The caregiver will visit people in their homes, bring food or medicine, and if required arrange admittance. The caregiver will also establish relationships with community leaders: £2,000

Foundation for Hospices in Sub-Saharan Africa (FHSSA) ⁶¹

This US-based organisation was established in November 1999 to support the efforts of hospice workers in Africa. An international consultation was held in 2000 to devise a strategy for hospice and palliative care development in the sub-Saharan region. Recommendations for funding were approved and supported by standards for African programmes seeking assistance. These standards were developed from those adopted by the HPCA. During 2004, FHSSA became part of the US based National Hospice and Palliative Care Organisation. FHSSA has promoted the development of reciprocal ‘twinning’ arrangements, examples of which can be seen in Table 10.

Table 10 ‘Twinned’ hospices in South Africa

Sources: Abigail Fowlkes Gutierrez (FHSS) - USA twins; Avril Jackson (Hospice information) - UK twins

Philip Disorbo is chief executive of the Community Hospice, New York. This hospice is engaged in twinning relationships with South Coast Hospice, Port Shepstone, Tapologo Hospice Rustenburg, and Island Hospice in Zimbabwe. Speaking at the 12 th International Conference on the Care of the Terminally Ill ( Montreal, 2004), he acknowledges the value of twinning but suggests that the goal of the exercise should be to forge closer relationships between hospices – involving joint action – following on from the initial twinning period.

The partnership is very much a group effort. Once you get into a meaningful partnership you quickly learn that everybody gains. So you quite quickly evolve… Twinning itself is becoming outmoded, especially in hospice-to-hospice relationships because the twinning period refers to the initial friendship period, and good though that is, it is not where we need to go. Quite quickly our relationship developed into the working partnership; and the collaborative partnership among these programmes is where such partnerships can become a global HIV/AIDS intervention - and I don’t think they need $75,000 of funding.⁶²