I am involved in my care – really?

I am involved in my care – really?
6th September 2016 Steph

Imagine a world where the supermarket involved you in your grocery shopping; where the travel agent involved you in your holiday; where the restaurant involved you in your meal. Sound strange? I’m not surprised – these are all situations where we feel that we’re, to a large extent, in charge. Shame the same can’t be said when it comes to health care.

I was at an outcome development session last week and one of the proposed outcomes was described as, “I am involved in my care”. I took exception to this phrase, not surprisingly if you’ve read some of my other blogs (e.g. ‘What’s in a name?’, ‘Top tips for engaging with the public’). What gives us the right, I asked, to tell someone that they should only expect to be INVOLVED in their care. Who’s care is it anyway?

Let’s go back to my supermarket analogy. I need to buy some groceries because my cupboards are bare so I go to the supermarket. The supermarket staff ask me why I’ve come and what I’d like to get out of it, so I tell them. The staff then proceed to tell me that that’s not what I really want or need and blind me with technical terms, fill my basket with things that they assure me are the things I need and then send me on my way. I get home, find I’ve been given things that don’t really suit my needs and I certainly haven’t got them in a format I can use so I just leave them to go off or have a lot of very uninspiring meals for the next few weeks. Doesn’t sound right does it? But that is, in effect, what we do all the time to patients.

I’d argue that letting and helping people take charge of their care isn’t just a fluffy nice to have. Being ill can be pretty disempowering at the best of times. But when you’re then confronted by a workforce and ethos that thinks that involving you is something that they’ll aim for, all power can be stripped away.  It’s tempting to start to believe that there is nothing that you can do to help yourself, that you have no control over the situation and that can lead to giving up ownership altogether.

All too often people tell me that they’ve been given medication by their doctor but they don’t take it for various reasons.  Often they don’t even really understand what the condition they are being treated for is, occasionally they don’t even know what the condition is called. Frequently people don’t know the consequences of not following through on a treatment regime. Sometimes, these people are very educated and ‘in-control’ people in every other aspect of their lives.  But something about health, the way they are treated, be it the language, fear or the ‘I’ll involve you’ mind-set, leads them to lose the sense of control over their own treatment.

The result of all of this is sub-optimal treatment and, increasingly, frustration from health services because patients don’t do what they are supposed to.

So, I’ll carry-on with my campaign to shift health service mind-set from involving people in their care, to people driving their own care. Remember from ‘What’s in a name’, patients should be the drivers of their care (not involved in it), clinicians the sat nav – advising and guiding, and the health system is the vehicle that helps patients get to where they need to be.

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