Advocating advocacy: challenges cancer patients face in SA (Part 2)
In the previous article, we mentioned the importance of cancer advocacy to bring attention to areas of need in terms of cancer services in South Africa. Here are the eight challenges that were found in the research1.
ONE: Emotional challenges
The total lack of psychosocial support services.
- The sparsity of psychosocial support services was reported in both the public and private oncology services in SA.
- Only a small number of patients could access support from a few cancer charities.
- The management of distress associated with cancer is a core part of the treatment protocol and is not sufficiently prioritised in SA oncology care.
TWO: Lack of information
Patients reported a lack of information about cancer and cancer treatment.
- Many said they didn’t feel informed about cancer and treatment.
- Informed consent is a legal requirement before starting cancer. treatment, but the way information is shared is not always understood.
THREE: Powerlessness
This an emotion experienced by many cancer patients.
- This provoked worries about the possibility of negative treatment outcomes.
- Healthcare services were not patient centred.
- Patients did not know what to expect.
- Treatment equipment, such as radiation machines, were not functional.
- Delays meant that patients had to wait for months to access treatment.
FOUR: Physical and treatment challenges
These are huge factors impacting cancer patients and their families.
- Treatment has severe side effects that are not always easy to manage.
- This can be a serious threat to patient’s quality of life.
- Side effects make patients very anxious and vulnerable at a time when they were trying to come to terms with their cancer treatment.
FIVE: Poor service delivery and lack of access to care
This is due to breakdown of South African health services.
- The collapse of cancer services in some provinces over the last 10 years.
- Poor maintenance of equipment.
- Major out-of-stock cancer drugs.
- Lack of much-needed policies to guide cancer services.
- Long waiting lists for cancer surgery and treatment.
- Private sector has been troubled by the extremely high cost of cancer treatment.
SIX: Finances and transport challenges
Most patients having treatment in the state sector face these challenges.
- A significant proportion of the SA population live under economic stress.
- When a diagnosis of cancer is received by a family member, this is a devastating blow to very vulnerable families.
- Financial stress was noted as a threat to treatment compliance.
- This was particularly difficult for those needing to attend treatment centres far from their homes.
- Rural patients are severely affected.
SEVEN: Stigma challenges
These influence the way people respond and behave when they hear they have cancer.
- Cancer has different meanings to various communities.
- Cultural beliefs and myths that impact the cancer experience negatively can include that cancer is contagious or that it is an evil spirit.
- Stigma in combination with a lack of public education can overshadow the importance of early detection.
EIGHT: Schooling challenges
These include paediatric and teenage cancer patients.
- Exposed to treatment for long periods, therefore schooling is impacted negatively.
- A long-term impact on their quality of life.
- The current health system doesn’t provide adequate support to this group of patients and families.
- Urgent intervention is needed to address the complex issues.
We call on all cancer advocates to monitor and speak up about the needs of cancer patients using state and private oncology service. This can be done via the Cancer Alliance website.
MEET OUR EXPERT – LINDA GREEF
Linda Greef is a masters level oncology social worker, with over 30 years experience. Being an ovarian cancer survivor directed her specialising in oncology social work. Her passion to make a difference was born from her work with CANSA in the early 80s, when she was confronted with the inequity of services that state cancer patients were confronted with.
MEET OUR EXPERT – DR LYNN EDWARDS
Dr Lynn Edwards has been a psychologist for 30+ years. Influenced by her own cancer experience, she is sensitised to the threat that cancer poses to mental well-being. Thus is promotive of education that encourages the incorporation of mental healthcare into ‘best-practice’’oncology protocols.