You probably know a powerful patient advocate. The sort of person who seems to have boundless energy, expert knowledge, and an ability to tell it like it is. But what happens when experts by experience have their own moments of vulnerability?
In the summer edition of the Patient Experience quarterly magazine, Sue Robins talks of her experience of moving from patient advocate to cancer patient. Her account is a powerful illustration of how independence and assertiveness can dry up in the face of illness.
Patricia Cantley tackles similar themes. Her parents had to summon up their courage to ask questions about their son’s care – fearing, among other things, that any complaint might affect their daughter’s prospects as a medical student.
We have to remember how hard it can be for patients and relatives to say what matters to them. The people who are actually voicing concerns may just be the tip of the iceberg.
Our third commentator, Martin Taylor, has Parkinson’s Disease. He is one of the growing number of people living with long term health conditions. It is important that their experiences are understood, which is why many charities and patients’ groups run awareness raising campaigns. But do such campaigns work? Martin questions their effectiveness, and suggests a different approach.
The magazine carries their usual top picks from the evidence base on patient experience and patient/public involvement – and last but not least, a NHS@70 gift to their readers is a specially commissioned set of patient experience posters.
Download magazine: http://pexlib.net/?178215