Recent research revealed significant gaps in practice and challenges regarding levels and access to services and supplies related to (mainly urological) incontinence for the spinal cord injured/afflicted (SCI/SCA) person across public and private sectors of SA. This is most notable for essential long term care required after discharge, including annual check-ups, management of complications and access to supplies. While few centres may attempt to provide a "centralised" service via the integration of care, once discharged to the community, persons in need are encouraged to seek assistance via their local community clinic and medical practitioner, who are often not equipped or are unfamiliar with management of SCI related complications, and seldom, if ever, return to their original rehab unit.
This appears to be driven by a combination of factors, including lack of resources, expertise, lack of consensus regarding clinical practice, whether in public or private practice, disjointed supply chain infrastructure, and inconsistent reimbursement policies by various payers, be they Government, Road Accident Fund (RAF), Workmen's Compensation Fund (COID) and/or private medical aid schemes (MAS). This appears to be underpinned by a general lack of awareness of patient rights to care by many stakeholders with respect to both access to care as well as obligations of the respective funders of benefits.
In South Africa no formal training program exists for spinal cord rehabilitation physicians, only the exposure one gets within certain specialties involved with rehabilitation of these patients. Consequently there is no integrated care model, least of all for those with permanent spinal cord injuries who are discharged to their communities to manage their own care.
In response to these needs, the Continence Advisory Panel (CAP), under the auspices of the South African Spinal Cord Association (SASCA), has been created and intends positioning itself as a multidisciplinary interest/lobby group that will represent the scientific, educational, socioeconomic, ethical and professional interests of health care practitioners involved with and people living with bladder (and bowel) dysfunction associated with mainly SCI/SCA.
The concept of an advisory panel is well accepted world-wide and the CAP seeks to be an authority and knowledge resource for stakeholders in matters related to bladder (and bowel) management. This group intends to lobby other groups and government structures and funder community on reimbursement and their obligations to provide benefits. Critical to the sustainable success of the CAP will be multidisciplinary involvement and support from industry.
Introduction of new interventions is a constant in modern medicine. Medical practitioners practicing in this field require scientific evidence on net health outcomes before offering new procedures to their patients. In addition, to meet clinical expectations of practicing specialists, these must stay consistent with fundamental medical and surgical principles. The CAP intends providing a pathway for review of such new interventions and as custodians of relevant guidelines and commentators on the standard of care based on best available evidence, will continuously strive to integrate these into current practice.
The main aim of the CAP is to within a scientifically informed and collaborative environment, improve the quality of continence care for people with bladder (and bowel) dysfunction.
The objectives of the CAP are to:
An inaugural meeting was held in Johannesburg amongst interested health care practitioners, sponsored by QASA, under the wing of the South African Spinal Cord Association (SASCA) and independently facilitated, on 14th September, 2013. It was decided that the CAP had a natural link with SASCA but needed the support of other associated Societies, such as the Urology Society, as well as greater/diverse representation. Dr Francois Theron was nominated as interim Chairperson, through his position as Chair of SASCA. The intention is to elect an interim board and allocate portfolios so that work may continue.
Dated: 7 June 2014
Liason Officer: Mr. Mark Brand