Advocating advocacy

All cancer survivors and people touched by cancer are encouraged to step up and add their voice to the efforts made by Cancer Alliance to address the cancer care crisis in SA.

Why should cancer patients be involved in advocacy?

As cancer advocates, we are the watchdogs regarding improved service delivery to cancer patients; getting more affordable pricing of cancer medication for all South Africans; and ensuring that cancer policies and strategic plans are implemented. 

The current breakdown of healthcare services in the state sector is of great concern and we need to be the voice asking and pushing for change and action that will lead to improved services delivery to all cancer patients in SA. 

Definition of advocacy

Advocacy is an activity by an individual or group that aims to influence decisions within political, economic, and social systems and institutions.

Cancer advocacy is the process:

• where individuals or organisations speak up about social justice issues in cancer care to promote the availability of scientific, effective, affordable and accessible patient-centred cancer care for all.
• whereby those in positions of political authority are challenged to use their power to promote humane cancer care at a policy making and governmental level.
• whereby people speak out for the upholding of sound ‘best-practice’ models in the healthcare system.
• whereby communities are recruited to become aware and active in promoting a positive response to cancer challenges.
• whereby the response to services delivery issues not being met can result in the escalation of social action (pickets, social media campaigns, boycotts and legal action).

Evidence-based research

From the qualitative research that the authors (Edwards & Greeff, 2017) undertook between 2015 and 2017, it was very clear that South African cancer patients’ rights to healthcare and, more particularly, to cancer care was not being met adequately.

While the study identified many positive aspects of patient’s experiences, it was particularly interested in collecting information about the first-hand experience of cancer care challenges. 

The grassroots voices of cancer patients and their families were captured, analysed and published as three academic papers, which are now an international resource for advocacy initiatives, such as Cancer Alliance.

These articles report on the lived experience of 316 ordinary cancer patients and the challenges they faced. Hopefully, it will inspire you to become involved in the movement to improve cancer services in SA.

Cancer Alliance

This research is of particular use to the 30 NGO membership of Cancer Alliance, who focus on various issues concerning equitable access to cancer treatment across SA, both in the state and private sector oncology clinics. 

As a collaboration of NGOs, Cancer Alliance strives to promote actions that ensure that the government and the National Department of Health are held accountable to their mandates.

We all have a role to playSouth African healthcare professionals, cancer survivors, cancer NGOs and policymakers have a responsibility to work collaboratively to drive the actions that bring change to ensure that constitutional rights to healthcare for all South Africans are upheld. 

We call on cancer survivors to join Cancer Alliance and become involved in cancer advocacy in SA. We need your voice. Please contact us via www.canceralliance.co.za and become part of a movement that will ensure that cancer services in SA improve.

You can also access useful information from the Cancer Alliance toolkit.

In Part 2 of Advocating Advocacy, we will look at the nine most challenging themes cancer patients face in SA.

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. 

Bibliography

Anderson, P. (2011). Family History of cancer Important in Screening. Journal of the American Medical Association, 306, 172-210.

Edwards LB & Greeff LE. (2017). Exploring grassroots feedback about cancer challenges in South Africa: a discussion of themes derived from content thematic analysis of 316 photo-narratives. Pan African Medical Journal., 173. doi:10.11604/pamj.2017.28.173.11894

Edwards, L. &. (2017). A descriptive qualitative study of childhood cancer challenges in South Africa: Thematic analysis of 68 photovoice contributions.South African Journal of Oncology, 1, p. 8. doi:http://dx.doi.org/10.4102/sajo.v1i0.14

Edwards, L. &. (2017). Evidence-based feedback about emotional cancer challenges experienced in South Africa: A qualitative analysis of 316 photovoice interviews. Global Public Health. doi: 10.1080/17441692.2017.1357187

Institute of Medicine Report. (2008). Cancer Care for the Whole Patienst Meeting.Psychosocial Health Needs.Washington.DC: The National Academies Press. doi:10.17226/11993

Johansen, B. D. (2011). Screening for distress, the 6th Vital Sign: where are we, and where are we going? Psycho-Oncology, 20, 569-571. doi:10.1002/pon1986

NCCN. (Version 2.2018). NCCN Distress Management Guideline(Version 2 .2018 ed.). NCCN. Retrieved March 20, 2019, from http://oncolife.com.ua/doc/nccn/Distress_Management.pdf