I started this blog as a way to capture my thoughts on my involvement as a ‘patient’ in healthcare.
I’m a reluctant participant. Five years ago, I had never considered that I would ever have any health problems (you know, until I was, say, 90). Unfortunately, between 2009 and 2011 I managed the impressive of feat of developing a life-threatening pregnancy complication called HELLP syndrome, having a premature baby, being diagnosed with stage IVB diffuse large b-cell lymphoma and – just for good measure – contracting meningitis.
Thanks in large part of medical advances, I’m still here, but it has not been without its sacrifices. My lymphoma is in remission but one of the drugs that was used to treat it (Rituximab) left me with a chronic immune deficiency condition that requires monthly treatment. In short, I went from a pretty healthy 30-something, to one that was deathly ill, to one that manages to get by – all in the space of a couple of years. It’s been an adjustment to say the least.
In my pre-illness life, I worked in international development and threw around words like ‘equality’, ’empowerment’ and ‘participation’ a lot. I thought I knew what they meant and I loved working in countries like Sierra Leone and Vietnam. Post-illness, I’ve tried to apply my understanding of participatory processes to patient involvement and engagement in the UK. It’s been an interesting experiment so far, with lots more to come.
One thing I find interesting is the focus in healthcare on promoting “self-management”. If you believe that language is important (and I do), I’m not sure that promoting ‘self-management’ accurately describes what we should be aiming for. I manage me, all of the time. My doctors help me manage my condition some of the time, and I need their advice. While I do feel like enabling people to understand and manage their conditions is hugely important, I feel like using the words ‘self-management’ has the potential to be a cop-out for doctors who don’t take the time to get to know patients and how their lives work: basically using ‘self-management’ as a way of absolving them of responsibility. What I’d like to see is a new term which reflects the fact that patients should be supported to take the lead but that they also need expert advice sometimes. What is this called? Patient-led health? Collaborative management? I’m still working on the right term but while I do that, I’m hoping this blog becomes a way for me to both document and share my thoughts – I’m not sure if anyone is interested but I figured it was worth a shot! If you are interested, I’d love to hear from you!