South Africa’s Knysna Sedgefield Hospice began in 1986, when Dr. Joan Louwrens and nurse Sue Brukman teamed up to run a home care service from the trunk of a car. There was no name then, and no office or funding, just a desire by the two women to provide free palliative care for those who needed it. It has since grown to a palliative care center of excellence with an interdisciplinary team comprising one doctor, six nurses, two social workers, a spiritual advisor, eight home-based carers, and an administrative team.
Current CEO Dr. Janet Stanford says that, ‘It’s recognized now that you don’t need a terminal disease to be looked after, if it’s overwhelming and you need some help.’ The hospice provides anyone needing help with ‘the guidance of a team that’s really become very experienced with managing people’s symptoms and accompanying them on a difficult health challenge.’
Despite its relative youth and vast territory of 454 square miles (1,200 sq. km), Knysna Sedgefield Hospice offers a deep and rich wealth of services. In home care alone, hospice workers make 2,780 patient visits every month, driving a combined 6,800 miles (11,000 km).
The hospice delivers palliative care and pediatric palliative care both at home and on site, as well as bereavement care for families, care for caregivers, and a daycare for patients to socialize. It provides professional training in palliative care, bereavement training, and a course designed for volunteer caregivers who become part of the hospice team.
‘We care for all referred patients with a terminal or life-limiting illness. We also provide support and care to the family, including special support to the orphaned and vulnerable children,’ including puberty workshops and support groups for children.
Knysna Sedgefield Hospice has excelled measurably; by receiving a 99% score from the Council for Health Service Accreditation of Southern Africa (Cohsasa), it has achieved and held an enviable ‘five-star’ rating for 12 years. It was first accredited by the Hospice and Palliative Care Association of South Africa in 1992, and by Cohsasa in 2006.
The hospice also boasts astonishingly diverse and active community support; fully 60% of the hospice’s operating budget is achieved by local fundraisers. With all care provided for free, such support is absolutely crucial.
Annual and special events fundraise and raise awareness year-round, including: its Ladies Hillclimb Team, a group of women who love to race fast cars; the Donor Club, a lottery with quarterly draws that ‘generates a sustainable source of income’; a Golf Day; book sales; and the popular Carols by Candlelight, a Christmas tradition where attendees light ‘memory candles,’ and bring gifts for the hospice’s needy children.
Its estimated 200 volunteers are necessary to sustain these events, as well as to staff the hospice’s two charity shops. The hospice estimates that the equivalent in paid staff would be more than 1.2 million Rand (about $85,000). One shopper says she’s a charity shop customer because ‘whenever I buy something, it gives hope and help to someone who needs it.’
Dr. Stanford was the convenor of the publication of South African Palliative Care Clinical Guidelines, and is a member of an HPCA team advising the government on essential medicines for palliative care. The hospice is also proud to note that staff have published research in medical journals.
‘Our vision is to provide palliative care for all who need it. This is in support of the World Health Organization resolution of 2014 “to improve access to palliative care as a core component of health systems,” and in support of the South African Department of Health (DoH) resolution of 2017 “making palliative care available to all people of South Africa.” We cannot achieve this vision on our own, which is why we are passionate about palliative care training and mentoring available to all department of health staff and staff at elderly care facilities, as well as those from the private sector.’
‘People are often apprehensive about receiving hospice help,’ says Dr. Stanford. ‘But when we get their symptoms managed it can make their life better, and longer.’