Being polite about care planning

Newbould J, Burt J, Bower P, Blakeman T, Kennedy A, Rogers A, & Roland M (2012). Experiences of care planning in England: interviews with patients with long term conditions. BMC family practice, 13 PMID: 22831570 Access this article for free.

So often, the papers you write hide a wealth of memories that aren’t allowed into the rigorous academic arena. So it is with a paper I published with CCHSR and Manchester University colleagues last year, exploring experiences of care planning among people with long term conditions. We interviewed 23 patients, 8 jointly with their partner, across three regions. One of the areas was a rural tourist hotspot, where I headed for a few days at a time to go “data collecting”. Armed with a hire car, a map, and my topic guide, I zoomed around the local countryside, getting repeatedly lost as I sought out my arranged interviews. Each night, I retired to my hotel to write up my observations and sketch out analytical directions. And watch a bit of TV, of course: I’m not that dedicated. Our aim was to find people who were likely to have experienced care planning, most with multiple long term conditions, and talk through their individual experiences of this approach (at the time, high on the Department of Health radar of Important Things To Do).

For those of you new to care planning, what on earth is this anyway? Well, as we described it in the paper, care planning involves the negotiation and proactive arrangement of care between patients with a long term condition and their health and social care team. Its major components are the provision of information, shared decision making, and support for self-management. Care planning is usually expected to produce a care plan, a written document outlining a patient’s goals and the steps they would like to take to get there. And of course, all of this is expected to improve patient experience and outcomes (not that there is much specific empirical evidence for this, even after our long-term evaluation).

Unsurprisingly, we found no patient could remember a distinct care planning discussion. Over endless plates of tea and biscuits, I remember attempting to negotiate around blank looks and puzzled frowns. “Sorry, what is care planning?” “I’m not sure I’ve ever heard of that”. I eventually found new ways to approach the topic, but our conclusions remained the same. Amongst our interviewees, most of whom were frail with multiple morbidities, care planning did not happen remotely as policy wonks envisaged. There were no explicit meetings with health care professionals leading to carefully documented goals. Instead, there were bits of good long term condition care offered reactively in amongst numerous bits of not so good care. Interviewees seemed very accepting of what we all felt was inadequate care: I still clearly remember the research meeting where one senior team member shouted “CAN’T THEY SEE THIS IS CRAP CARE!” It seemed like care planning had a long way to go, except in an academic paper you need to choose your words carefully of course. We mildly pointed out “it may be necessary for professionals to engage these patients more directly in care planning”. Quite.

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