Dear Relapse: a love letter

This post has been the culmination of a few little seeds sown over the last few weeks...
A tweet at the end of May from the extraordinary Dr Kate Granger (@GrangerKate) made me start to think about what is positive about our health situations:
"This week has been properly amazing. And it was all made possible by having cancer. There is definitely a #silverlining to all this..."

This post is also inspired by a few letters I have read recently, from a doctor to a chronically ill patient, from a chronically ill patient to a doctor, and by far the most powerful, a video produced by the wonderfully talented and creative people from Flack in Cambridge, the audio of which we used in our Quality and Recover workshop recently.
It's not often you have to write a letter to something that is so close to you, but I feel that it is a great chance to explore the relationship I have with my relapses.
For references, my relapses are triggered by travelling and sudden neck movements, and consist of loosing movement in my legs (and left arm). It is frequently accompanied by headaches, blurry vision and crippling fatigue for four or five days.

Two weeks, two conferences, lots of ideas, but one thing missing...

The whole 'pacing yourself' self-management malarkey is all well and good, until really interesting events start to appear in your diary.... Then it all seems to out the window and I go to two conferences in 8 days and physically pay the price. But it is a price worth paying, as I have been lucky enough to enjoy two fascinating and stimulating days, meeting a whole array of wonderful and inspiring people, although one key ingredient was missing...

Does it matter how we acquire knowledge and expertise?

Knowledge and expertise are two very topical words in healthcare at the moment, but I want to challenge how we perceive and value them.

In the Collins English Dictionary that sits on my shelf, knowledge is defined as the 'facts or experiences known by a person or group of people', whilst expertise is defined as 'special skills, knowledge or judgement'. It surprised me to read that knowledge could include facts and experiences - the traditional paternalistic medical world seems to define knowledge as facts and dismiss experience. If knowledge can really truly encompass experiences, then my favourite term, experts by experience, is very much valid!

This wider definition of knowledge is slowly becoming accepted in the medical communities. I feel that we are moving away from the culture of "Doctor knows best". The knowing and knowledge to which that refers is very narrow (national clinical guidelines, drugs and tests, and the pathology of disease) but medicine is an art and science and a broad one at that. Accepting that knowledge covers both the facts, known best by the clinicians, and the experience, lived by the patient, we can turn the doctor-patient relationship into an equal one, and the perfect environment for shared-decision making.