Thursday, 21 November 2013

Sink or Swim... or Sail!

Sailing was a central piece of the jigsaw of my life. Being on the water, socialising with sailors and everything about it defined me. Following a particularly bad relapse triggered by a neck injury that happened whilst in the middle of the Solent, my doctors (who incidentally didn't sail) said a categorical NO to sailing. The jigsaw that made up my life was falling apart.  

From where they were sitting, and having had to pick up the pieces of me being transferred from a boat in the marina to dry land then whizzed with blue lights into A&E strapped to a C-spine board unable to move or speak, sailing seemed risky. I agreed with them. 

But I also began to realise there was a risk to my mental health if I didn't go sailing, as I plunged into despair and depression. Then I watched the Paralympics, and realised that there must be a way. The simple mechanics of what happened to my neck (which because of the extra bendyness caused by the EDS and my Chiari squishing my nerves a bit) could happen if I trip walking along the pavement. Just living seemed pretty risky, but I wasn't going to stop doing that was I?! 

Thursday, 7 November 2013

Transforming patient experience, WITH patients

I had the privilege of speaking yesterday at the King's Fund Transforming Patient Experience conference. The opportunity to speak about the role that patients can play in improving this has made me think more deeply about both what we can bring to the improvement process as patients, and what some of the challenges are. This post is a summary of the topics I covered in my talk. An abridged video of my talk is available here, thanks to the King's Fund.