Feeling overwhelmed. Sometimes that’s what being a patient is all about. Consultations, appointments, tests, results, advice, and therapy “choices”—what on earth am I meant to do? I’m not sure I even know what I’m being asked half of the time.
At home, at work, at school—not depressed, not unhappy, not fed up, just overwhelmed. Overwhelmed by the daily, hour by hour, minute-by-minute intrusion into my everyday that being a patient can be. Not all the time, not everyday, but sometimes.
I do want to “be better” at self-management, I do want to live the healthiest life I can, just sometimes it’s a bit much. A bit like having to perform everyday with a double matinee at the weekend and never a break.
A further intrusion into the regular experiences of being a long term patient comes with the next round of meetings, consultations, and appointments with the team, and when I say team I mean the sometimes randomly encountered stream of individuals who all have an expert opinion on how I should be managing, the ever changing role call of dramatis personæ that create the narrative to my treatment. In the space of the same week I can be asked for my blood pressure, weight, and heart rate three or four times. Don’t you all work for the same NHS? Why can you still not share that information?
Then there is the follow up with my GP. Why are you asking me for another blood pressure test and for my weight yet again? Is there some kind of pay-by-measurement scheme that I don’t know about? I don’t actually remember us ever talking about the results so why are you asking? What do you do with that information? How does it help me? If you’re overwhelmed with your workload and I’m overwhelmed with my condition where is the space for us to meaningfully connect and have a positive interaction? Less tests, more talk?
Why do I need to come in for another “health check?” Surely you know everything there is to know about me by now? When you say “Guidelines”—what exactly does that mean? If there are national targets and guidelines on what my BMI should be, why have we never had that discussion, other than for us to agree that “I could do with losing a bit of weight and doing more exercise” or if I have actually lost some weight and been exercising—why is that never mentioned?
How are some of those measures relevant to my care? And more importantly, if they are important are aren’t explained to me—how does it help me? We all work, we all need time to look after ourselves, and as patients we all need doctors who show an interest in how our condition affects our life. An interest in more than just collecting data and reacting to test results. All that data, all those charts, all those numbers, all that information swilling around in my head that somehow I have to interpret and be able to share with others. What am I meant to do with my questions, the ones that come to me later that day, or first thing in the morning?
Sooner or later I have to become an “expert patient” just to be able to follow the conversation, sooner or later I need to be able to apply the opinion, the test results, the weights and measures to self-management—to use the information and interpret it in the context of my own life. Sooner or later I want the “team” to ask me for my opinion, to be treated as a peer in the management of my condition and to feel like I have a genuine stake in decision making, real authority, responsibility, and accountability.
To get through the other side of being overwhelmed. Encouraged, comforted and assured. How can you help me help myself today?
Paul Buchanan is a patient with Type 1 diabetes. He runs Team Blood Glucose. He is part of The BMJ‘s patient panel.
Competing interests: None declared.