Just one more step. It was the only thought in my head. One more. If I can lift my leg, move it forward, even just a bit, and then repeat with the other leg. My objective, to get back to the car, which was about 50 metres away from me. Every step seemed to push …
Yesterday I had the honour of being a keynote speaker at a conference which focused on including patients in research. By this I mean people who live with illnesses should be equal members of the research team, deciding what will be researched and how the research is conducted. The phrase we often use is: Nothing …
My first experience of participating in research was over 15 years ago when I tried to get a trial started on a medication I was using to treat my Multiple Sclerosis, an illness diagnosed a decade earlier. It was unsuccessful. The principal reason, I think, for my failure was a an absence of knowledge of …
Why learning to be a Patient Expert has given me a purpose in life. Read More »
Patient advocacy has many rewards, helping a community and better research are just two. It comes with a cost, and I wonder, is it worth it?
Surrounded by terrible news. On the TV the presenters are asking when will this lockdown stop, can we survive this, or the world is in crisis. The economists are predicting global recession, and some are talking about a depression. There are websites counting the deaths, YouTube has channels urging us to prepare for the worst, …
My legs are a disaster. In the last year I have started using an FES device for my right leg, and my left one is now like my right was a year and a half ago. Sativex helps with my mobility, but its cost is prohibitive, and now I only use it occasionally when I …
How Patient & Public Involvement is giving me purpose. Read More »
