Do patients demand too much?
23 December 2013
In her first blog for The Point of Care Foundation, founding Director Jocelyn Cornwell reflects on the issues at the core of our work and a new and exciting project for 2014.
When I give talks about involving patients in the development of clinical services, there are always people in the audience thinking: “This is nonsense.” Last week it was a GP who lamented: “How can you expect me to do this? I don’t have time to talk to patients. Patients all want something different, so what’s the point? Patients’ have unrealistic expectations, how do I deal with that?”
Sometimes I think what people who object to the idea of patients getting involved are really saying is: “If I listen to patients I am afraid I will be overwhelmed by their needs and demands” or perhaps, more deeply “I am afraid I will end up identifying with the profound sense of vulnerability and dependence on others that comes with being a patient.” Dr Havi Carel, senior lecturer in philosophy at the University of Bristol and a patient, talked about this brilliantly at The King’s Fund’s NHS Leadership Summit earlier this year. Not surprisingly, I see it rather differently and I’ll try to use the films on the Foundation’s home page to explain why.
In the first film Liz Fradd talks about her mother aged 90 plus, and her experience of declining health and increasing frailty over the course of a number of hospital admissions. In the second, from the Cleveland Clinic in the USA, we see glimpses of the inner lives and thoughts of some of the patients and staff in the hospital. The camera treats them as equals. They are all human. In the third, Kieran Sweeney – GP, academic and patient – tells the story of his diagnosis and treatment for mesothelioma. Kieran also wrote about this in the BMJ
All three films have something to say in response to the concerns held by healthcare staff that patients have unrealistic expectations and listening to them is a waste of time. The films demonstrate that patients (and families) do not have unrealistic or unmeetable expectations. What really matters to them, in a profound and lasting sense, is how staff treat them as fellow human beings. They say that it’s not what people do for them, it’s the attitude of mind they bring to the interaction that matters. Liz says the staff who stand out are those who show regard for family members’ knowledge of her mother, and who take an interest in her mother as a person. Kieran is satisfied with his cancer treatment and with the process, but he’s hurt by the way people treated him. He reminds us that “Medicine is not solely a technical activity and pursuit, it’s about understanding and being with people at the edge of the human predicament.” And goes on to say, “There was a point when everyone in the team, including my wife, knew and I did not. It doesn’t take much to change from upsetting communication to communication that puts someone at their ease.”
The third film says it all “If you could stand in someone else’s shoes, see what they see, hear what they hear, feel what they feel, would you treat them differently?
I am delighted that this, my first blog for The Point of Care Foundation, coincides with the announcement that we are to receive funding from NHS England to develop a course in Experience Based Co-design (EBCD). EBCD is a proven and effective method for improving services that brings patients and staff together to re-design and co-produce the changes.
If you want to find out more about EBCD and the course or about our work, email