Pupperty

On Thursday last week I was at an event where a professional really honestly said "I'm not really sure what working with patients mean". I appreciated their honesty and mentioned that it is often harder to describe than it is to feel, and sometimes easier to explain what it isn't.

Last week also proved the culmination of another experience where "involvement" was a very visceral feeling of extremes.


At Future of Health, I felt pride in being among all the brilliant people that constituted the People's Panel, and seeing them challenge conversations so effectively and shape the way the day panned out. I felt enormously privileged to be able to work do closely with people like Ceinwen Giles (@ceineken) and Fiona McKenzie (@fkmckenzie) along with immense gratitude to David Gilbert (@DavidGilbert43) for coaching me through the week leading up to it, when the whole process had eaten away at my confidence.

But I also felt deep fear and anxiety about the day. This fear and anxiety was rooted in the public perception about my role and personal experience of not being able to fulfil that role. At worst, I felt like a puppet in a box.

As the event drew closer, I realised I had not seen the wood for the trees and had really only been considering the involvement of patients/carers/people on the day and not how that would shape the conference themes through the day. I'd limited myself to my patient box, but also hadn't been shown an alternative.

The reality dawned on me that while publicly I might have been seen to have ownership of the Future of Health, I felt really uncomfortable with that public association of me with it as I felt didn't have ownership over the process - merely an advisory role. Whilst there is nothing wrong with the concept of patients as advisors, the issues lie in how that advice is implemented. Is it staying true to the why and how it was intended? Hence my anxiety as the day grew closer.

What is the point in learning if we don't apply it? I challenged Martin McShane to just this, so I feel it's only right for me to be open about how I'm going to be applying the rich learning of this process:
- raise concerns if involvement doesn't feel right earlier and more effectively
- start involvement with a clear plan of implementation of discussions
- be more aware of when things are eating away at me and do something about it!
- surround myself by people who I know also "get it" for support
- be open when I'm struggling with something
- remember that being involved with something as a patient doesn't mean I always have to defend it... differing opinions from outside should be welcomed as that is what my role is on the inside as a patient leader!

Some of our learning from last year worked and made 2014 better than 2013. But to stay true to my values, I have to be open and honest about the challenges that 2014 involved and the personal impact on me. I wish the current people's panel all the very best in continuing to drive this forward.