In South Africa, the successes of the hospice movement have been described in the following terms:92
I think one of our first successes is the fact that we were able to get the community together to give us the support that we needed to establish the hospice in Verulam in order for us to cater for the needs of terminally ill patients. Secondly the financial support that we receive on an ongoing basis from people: a very clear indication of their commitment to our goal of establishing our hospice. And, thirdly, the fact that our hospice has been selected by the Global Fund as a site for training nurses and caregivers to serve areas where there are HIV/AIDS patients, is an indication of the recognition of our capacity to run the services on proper lines. GK Moodley – chairperson, Verulam Hospice.93
Our successes? Treatment! Treatment: it has to be. We discovered antiretroviral treatment and our lives have changed. We still have the chronically ill children that come in from hospital or through our home-based care programmes where it’s really too late to do anything: but all those children that were sitting there not getting better - not actually getting worse - going into hospital every few months for some kind of treatment, coming back out again, we’ve put them all on [ARV] treatment and they’re all now sitting in Sanctuary, really well. Children that were four years old, hadn’t walked, hadn’t talked, are now at school, you know. It’s been the most amazing experience. So, yeah, we’re big advocates of treatment. I think if I have a regret it’s that we didn’t, we didn’t do it sooner, but because it’s not free and we had to pay, the committee wanted me to secure enough funding to guarantee ongoing treatment prior to starting it, which we did on an annual basis. So we were covered for last year, we’re covered again for this year: but yeah, what I’ve done now actually is just write it into our running costs: as you budget for water, food, electricity, so we budget for treatment as well. Jackie Schoeman – director, Cotlands.94
Sometimes, if you go to the black communities, when you tell them about hospice they mention that they thought that hospice is for a certain class of people: people who can afford, people who’ve got money, people on Medical Aid, especially the white people; they didn’t know that even the black people can go to hospice, even if they are not on Medical Aid. So one would start explaining that hospice, regardless whether you can pay or not, regardless of your colour, as long as you’ve got a terminal, incurable condition you can be a hospice patient. So I think those are also successes because after you have explained to them, now they say, ‘Oh, we can also go to hospice’. And some of the families they also say, ‘Thank you very much, sister, we now know what hospice is’. Zodwe Sithole – home care sister, Highway Hospice.95
I think the success story of Centurion Hospice at the moment is that we work as a team, each in our specialised field, not feeling second by one another, but we can hold hands, and we can get the workers who run the shop, and the sisters and the business people, and we all just give; and one doesn’t feel threatened by the other - or that you you’re more important than the other one. It’s quite a team at the moment. Marie Backeberg – nursing sister, Centurion Hospice.96
I think that the first success [of the hospice movement] is the very work that it does: we have an advocacy programme, but the most important advocacy for everyone to see is the work we do. So there are few families that you could speak to that have not had word of. or experience of. the wonderful support and service they’ve had through hospices. Now I think that that’s a success story. One of the deficiencies is that there are many areas which still do not have such supplies, such facilities and services, and part of our plan is to develop those services in areas that are either under-served or not served at all. So I think that’s probably the first and most important success. I think the second aspect that I would consider important is the fact that, in our AIDS epidemic in particular, denial has been a major political barrier; and through the work of our organisation, truth and acceptance of reality is happening - we are a very important vehicle in carrying that message across. I think the third one is that all our very extensive training processes, at all levels – volunteers, community caregivers, professional nurses and now doctors at a postgraduate level – that educational influence, spread across the country increases, the value of medical services way beyond the limited services that we can supply. JP van Niekerk – chairperson, HPCA. 97
Definitely, the fact that we have standards for management and governance in place, that is one of our really huge successes; it took us two years to develop those standards but what I also said is that it’s not just about doing the standards. Standards go hand-in-hand with policies and procedures, hand-in-hand with other accompanying documents; so what we said is that we’re not just going to develop the standards, we’re going to develop model policies and procedures to go with those standards: and if the policies and procedures make provision for a specific document - that must be in place. We’re also making provision for developing those documents, so it is a major success the fact that we are able to give people the full package. André Wagner – organisation development officer, HPCA. 98
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