The article covers both sustainability and engagement issues; pointing out that with so many people living with long term conditions (LTCs), sustainability of services and higher public and patient expectations call for an urgent re-design of services. The authors acknowledged that those living with LTCs spend a small fraction of their time with their clinicians and much of their time managing their conditions themselves. Furthermore, those who are managing effectively generally have better outcomes.
So why doesn't it happen? The authors of this article refer to an evaluation of a failed attempt to introduce such a change in the UK, suggesting that support for self management was seen as irrelevant due, inter alia, to a failure to implement cultural change and the fact that it was not supported by guidelines or commissioning arrangements.
An extremely good illustration of one of the benefits of a change in approach is given by the authors, referring to National Voices work on support planning. They point out that most people would not feel comfortable going into an important meeting and being asked to make snap decisions without prior preparation and yet this is generally what happens in the healthcare setting. Instead, they suggest that greater participation could be achieved by giving people test results in advance and prompting them to list what they'd like to discuss.
This seems eminently sensible to me. Bizarrely, I had to push hard to be sent my genetic testing results in advance of the consultation to discuss them in order to prepare my questions, while (in order to save clinic time) I had been given my confirmed diagnosis hurriedly over the phone with a date for an appointment just over a week later. Knowing the genetic test result in advance meant that I was able to concentrate on what I wanted to know given the actual outcome rather than having to think of questions for all possibilities.
Many hospitals in England (but ironically, not mine!) are in fact moving to a more self-directed follow up model for breast cancer patients and this is also true in many places for diabetics, but generally there is still a long way to go before we have an overall person centred approach to the care of those living with LTCs. I can't help but feel that it is incumbent on those of us already fully engaged in managing our care and treatment to encourage and support our own clinicians in taking this approach, particularly when this may not be easy for them.
It was precisely this approach, with both me and my clinician fully engaged, that made my annual appointment such a positive experience a few months ago.