Empowerment of parent carers is a fallacy when healthcare doesn’t listen

I am a qualified nurse, wife of a GP, and parent of a young man with complex disabilities. As I navigate the healthcare system as a carer for my son I sometimes feel as though I’m being fed a line about empowerment, while using a healthcare system that doesn’t listen. The stories of Martha Mills1 and Oliver McGowan2 show the tragic consequences of patients and parent carers not being believed or heard. As a parent carer, I do not need an empowerment programme, I need a healthcare system that doesn’t disempower my voice, authority, and expertise. This is something I experienced at the point of my child’s diagnosis and throughout our dependence on healthcare services.At every step of my son’s life, I am scrutinised by healthcare practitioners and the systems they function within. For example, when attempting to start my son on a blended diet—giving him the same food as…
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