Patient activation, self-management, shared decision-making….all of these sound great in practice. I, personally, would be very happy to self-manage myself. If I could figure out how.

I never set out to be “a patient” when I grew up but life takes turns you don’t see coming. Seven years ago I was diagnosed with Stage 4 diffuse large b-cell lymphoma. While my high-dose chemotherapy treatment pushed the disease into remission, it also left me with many long-term side effects, one of which is a poorly functioning immune system. I can just about manage the monthly immunoglobulin infusions and the regular blood tests, together with flu jabs and other banal infections. But if you add anything else into the mix, I feel like my carefully self-managed house of cards collapses. 

Last summer, for example, I developed a weird patch of skin on my leg. Years ago, I had something similar on my arm and it turned out to be an autoimmune condition which later disappeared. Wasn’t it strange, I asked my immunology nurse in June, that someone with a weak immune system would also develop an autoimmune condition? Quite frankly, I felt a bit miffed. My immune system can’t fight off the flu, but it’s attacking me instead?

I was given a rapid appointment with an immunology consultant who basically said my immune system was “confused” and sent me away promising to refer me to a dermatologist after I had some blood tests. A few weeks later, I received a letter telling me that I needed a liver ultrasound due to “long-term elevated liver function tests.”

Thinking that this was a mistake—no one has ever mentioned my liver as a problematic part of the body—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, weeks later, I went for the ultrasound—and was told that while my liver was fine, my right kidney needed to be looked at. According to another doctor who followed up with me, there was—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 remain unclear about exactly what may be wrong with my kidney since I’ve never actually had anything in writing to describe the problem. The registrar who told me that my liver tests were fine also said that I needed a CT scan on my kidney. So, despite my misgivings, I went for the CT scan. Two weeks later, I have no idea of the results. And I never have had that dermatology referral that I asked for back in June.

To be totally 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? I don’t know. 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 really 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 so that I know if my levels are dropping. All of that, plus the worry of relapsing with lymphoma, keeps me pretty busy and stressed.  Being throw in to a Kafka-esque nightmare where serious things may or may not be wrong with me feels like it’s just too much.

Patient activation sounds great on paper but what people often forget is that patients can only be activated in a system that enables it. An enabling system is one where the right results would be given to patients with a clear explanation about what they mean and what sort of follow up is required. An enabling system would also tell patients if they need to seriously worry, or if what is being investigated is unlikely to seriously impact on their quality of life.

In my daydreams, the solution to all my problems is a highly organised “health PA.” This highly competent and organized person would open the letters and read the texts from the hospital and keep me in the loop on a need-to-know basis. They’d find out what tests I need and why. They’d tell me if the results looked good. And they’d tell me when I really needed to worry. The rest of the time, I’d just leave the planning and worrying to the PA while I carried on about my business.

I realise, of course, that this solution is unlikely to be realized, not least because I can’t afford it.  Until I win the lottery then, I’ll try and muster the energy to keep chipping away at the path to land of the healthy, one CT scan at a time. And I hope that one day (one day!) that dermatology referral letter will pop through the letterbox.

Ceinwen Giles is a director at Shine Cancer Support and a Trustee of the Point of Care Foundation. She also works as a consultant in the fields of patient involvement and experience and is an associate at Swarm.

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 a number of organisations: King’s Fund, Macmillan, Lymphoma Association, NHS Employers, NHS Confederation.