I was once described as a covert
rebel when it came to my diabetes self-management and the treatment I need from
my health care team. I suppose this meant that I would hide a lot of the issues
that I had with diabetes, not only from Health Care Professionals (HCPs), but also from myself.
Obviously this isn’t something that got me very far… but being secretive was a
reaction that evolved from many health related experiences that I didn’t
understand or that I didn’t want to go through again.
So today I suppose I’m being a rebel, but an
overt rebel.
You know those forms that we’re
given to establish our emotional and mental state when it comes to life with
diabetes… PAID questionnaires, mood questionnaires… do you have a smiley or a
frowny face questionnaires etc. Well I’ve had some of these for a few weeks
now, sitting in my lounge collecting dust. Having filled in the exact same forms only 2 months ago and expecting some sort of feedback afterwards, I decided to think things through in more detail than I usually would before completing them...
I suppose they occasionally make
a good coaster for my tea, but obviously they have a much more important job. But
what is that job? It’s never been explained to me. I know that I’ve been
handing in these questionnaires for many years now. I recalled in a blog recently completing one when I was around 18 years old, and I’ve done quite a few since then for different HCPs… but what are they
for? What can they do for me? If a questionnaire can evoke tears in a patient,
surely they are addressing an issue that needs to be followed up?
I know what they tell me… they
tell me if I’m coping or not, if I’m engaged in my health or not, if I’m
worried about the future with diabetes or not and many more things. But then
what do they do? Once I’ve completed them what happens next? Are they a box
ticking exercise? Maybe they go towards a giant pool of data that’s been
collected about patients all over the local area… maybe they just go into a
filling cabinet – out of sight out of mind? I really have no idea!
What happens to patients after we’ve
filled in these thought provoking forms? I can only talk from personal
experience but after filling them in I’m left with an open door… one that I’ve
kept closed for many years… a door that once is opened is hard to close again when I’ve been asked to
address questions such as:
Do you feel scared when you think
about living with diabetes?
Do you feel constantly concerned
about food and eating?
Do you have feelings of guilt when
you go off track with your diabetes management?
So I answer the questions that are
placed in front of me, often with test results or blood glucose patterns swimming through my head, with only myself and my HCP in the room, in an environment that isn’t exactly relaxing and with no explanation
of why I’m being asked to do this or what will happen next… and I face up to
the fact that actually, these questions do force me to reflect on how I’m
feeling, managing and coping, but I just hadn’t acknowledged it until that
moment. Why hadn’t I acknowledged it? Because I can’t always do that on my
own. Quite often that’s a feeling that scares me… and then I leave. I go home
on my own and I reflect. It's something that I do without even realising I'm doing it, but I think about my answers... Cue the covert rebel wanting to come back into play.
Then I repeat this routine again
when I’m asked to…
However this time I haven’t. I’m
waiting for an answer. I’m waiting for an appointment so I can ask “why and
what’s going to happen afterwards?”
I understand the importance of collecting
data but I also know, as a patient, the importance of assessing, planning, using
interventions, and feeding information back to patients… involving them in
every aspect of their care.
If I am going to be addressing issues that life with a long term condition can bring, as and when it is required of me, then I will only do so when
there is a plan in place for the repercussions of this exercise. My HCPs may call me difficult for taking this stance, people reading this may not agree that it's the right thing to do, but in order to be engaged in my care (which is what my team wants) I want to be engaged and informed in all aspects. I think that's only fair.
Reading this blog back before hitting the publish button I feel that I already know what the answer will be when I ask my question... but I hope that I'm wrong. As for the support that I may or may not get as a result of these questionnaires... that's a whole other topic to be discussed another time.
Ninjabetic x