Well the findings were really interesting and demonstrated that people did a lot of work before, during and after their clinic visits. Their lives were about attempting to fit their condition into their lives but each time they went to the clinic or had an appointment with a health care professional they were reminded that their condition was more in the foreground. Weeks of anxiety and uncertainty became their companion leading up to their appointment, concerns about parking, time away from work, who they might see, results that might show complications developing or poor control that might lead to displeasure and a sense of failure.
I found these experiences very sobering and wondered what to do with them given how much time and effort was being put into making people comply and attend the clinic. None of the messages in the “how to” manuals of care for HCPs encouraged them to consider what was happening for people coming to the clinic. It was all about getting patients to understand more about their condition and be more like professionals.
It deeply bothered me and as I had moved from practice here was very little I could do myself to bridge the gulf between what ought to be happening in practice and what might help people coming to the clinic. For the second stage of the research I interviewed health care professionals and this made me realise that very few of them saw the patients’ perspective as critical to getting the experience right for people.
I guess this sense of powerlessness and lack of purpose was the main reason I didn’t progress my PhD, I found it very difficult to motivate myself to write it up and also I didn’t seem to have a receptive audience for the message ... it wasn’t really compatible with the received wisdom of the time and I couldn’t find any practitioners willing to work with me to help make a difference in practice.
The long lasting impact of this is something I will explore further but for the moment I want to reflect on the lack of interest from practitioners and that 10 years later medicine comes forward with a plan.. it has made me think...http://www.yearofcare.co.uk/