Coping with self managementBMJ 2016; 355 doi: https://doi.org/10.1136/bmj.i6442 (Published 30 November 2016) Cite this as: BMJ 2016;355:i6442
Patient activation, self management, shared decision making . . . all of these sound great. I would be very happy to self manage—if I could figure out how.
Seven years ago I was diagnosed with stage 4 diffuse large B cell lymphoma. Chemotherapy pushed the disease into remission but it also left me with long term side effects, one of which is a poorly functioning immune system. I can just about manage the immunoglobulin infusions, blood tests, flu jabs, and infections—but if you add anything else into the mix my carefully self managed house of cards collapses.
Last summer, for example, I developed an unusual patch of skin on my leg. Years ago I had something similar and it turned out to be from an autoimmune condition. “Isn’t it strange,” I said to my immunology nurse, “that someone with a weak immune system would also develop an autoimmune condition?” Quite frankly I was a bit miffed: my immune system can’t fight off the flu but it’s attacking me instead?
In June I saw a consultant who said my immune system was “confused” and promised to refer me to a dermatologist after I had had some blood tests. A few weeks later I got a letter telling me that I needed a liver ultrasound because of my “long term elevated liver function tests.”
Thinking that this was a mistake—no one had ever mentioned my liver before—I queried it. The consultant confirmed that I did indeed have long term elevated liver function tests and that I definitely needed the ultrasound. So, a few more weeks later, I went for the ultrasound—and was told that, while my liver was fine, my kidney needed to be looked at.
According to another doctor who followed up with me, there wasn’t—and never has been—anything wrong with my liver function tests. And, no, he didn’t know why I was sent for the ultrasound.
I still don’t know what is wrong with my kidney since I’ve never had anything in writing to describe the problem. Two weeks after the scan of my kidney, I have no idea of the results. And I never had that dermatology referral that I asked for in June.
To be honest, I’m mentally exhausted. I work full time, I have a small child, and—in between medical appointments—I try to have a life. Should I be worried about my kidney? Should I be “actively” trying to “manage” the situation and find out what’s wrong? Probably.
But I’m tired. I’m tired of hospitals, I’m tired of worrying, and I’m tired of not knowing what’s going on. I manage my weak immune system as best I can—I take a ton of pills on a daily basis, I never miss an immunoglobulin infusion, and I keep a close eye on my blood test results. All of that, plus the worry of relapsing with lymphoma, keeps me busy and stressed. Being thrown into a Kafkaesque nightmare where serious things may or may not be wrong with me feels like too much.
Patient activation sounds great on paper but people often forget that patients can only be activated in a system that enables it.
An enabling system is one where the right result would be given to a patient with a clear explanation of what it meant and what follow-up was needed. An enabling system would tell a patient if they needed to worry, or if what was being investigated was unlikely to seriously impact their quality of life.
In my daydreams the solution to my problems is a “health PA.” This competent and organised person would keep me in the loop on a need-to-know basis. They’d find out what tests I needed and why. They’d tell me if the results looked good, and they’d tell me when I actually needed to worry. The rest of the time, I’d leave it all to them while I carried on with my business.
I realise, of course, that this solution is unlikely to be realised, not least because I can’t afford it. Until I win the lottery, I’ll try and muster the energy to keep plodding away on the path to health, one scan at a time. And I hope that one day a dermatology referral letter will pop through the letterbox.
I’m tired of hospitals, I’m tired of worrying, and I’m tired of not knowing what’s going on. I manage . . . as best I can. All of that, plus the worry of relapsing . . . keeps me busy and stressed
Competing interests: I have received fees for consulting from GlaxoSmithKline UK. I’m a trustee of Shine Cancer Support and the Point of Care foundation. My speaking engagements have had travel reimbursed (but no other fees paid) by the King’s Fund, Macmillan, Lymphoma Association, NHS Employers, and NHS Confederation.
A version of this article originally appeared as a blog at blogs.bmj.com/bmj.