Kathleen Gillett from programme partner Dorset Macmillan Advocacy writes in the first of two posts about how our peer advocates can support older people affected by cancer achieve voice, choice and control in their cancer journey:
I recently read the terms ‘health literacy’ and ‘patient activation’ in a report by Macmillan Cancer Support and found them useful labels for ideas that had been floating about in my head.
Let’s talk about it: Improving information and support describes the role of health literacy and patient activation in a chapter on Improved Communication.
‘Poor reading and comprehension skills are not always taken into account when providing accessible information and support, with serious implications for health inequalities and outcomes. While the problem of functional literacy remains a huge challenge, it is possible to be fully literate and yet health illiterate. Health literacy concerns the ability to read, understand and act on health information, as well as navigate the health and social care system.’
Practically, low health literacy can impact on patients in a number of ways. These include their ability to follow treatment plans, seek support, participate in consultations, understand performance data, understand the implications of provided information, and communicate their own values and needs. Individuals vary in their level of patient activation – the measure of a person’s skills, confidence and knowledge to manage their own health.’
It helps me to relate theory to practice and I thought of two people that we supported in the early days of Dorset Macmillan Advocacy.
The first advocacy partner described herself as having been ‘a poor scholar’. She disliked written information and kept hospital paperwork out of sight. You could say her level of general literacy was low. Her health literacy or her ability to understand her condition, her treatment plan and its implications risked being affected by her general literacy. She knew that verbal processing of information through discussion worked much better for her. She had been able to ask a health professional for a translation into plain English ‘Does that mean…?’ With her advocate she was able to discuss her condition and the implication of treatment options at several key stages of her journey. She said that having an advocate also boosted her confidence.
The second advocacy partner sought to increase his level of health literacy. He undertook extensive internet research into his condition and travelled to see a specialist. He also had a very strong level of patient activation. In other words he was strongly motivated to be actively involved in clinical treatment decisions and make lifestyle changes that he judged to be beneficial to his situation. However his responsibilities as a carer presented a physical barrier that also put him under huge emotional strain. His advocate worked with him to put arrangements in place that permitted him to move forward with his own treatment.
The two people described had different cancers, different personal circumstances and different personalities but both benefited from advocacy support which is always tailored to each individual’s needs and situation.
Kathleen Gillett, Dorset Macmillan Advocacy